| | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | . | P.S. We are now in collaboration with Patients Like Me. We encourage participants in our study to also start a profile at their website http://www.patientslikeme.com/welcome/community/als | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | . | 1 | Humberto Macedo | Brazil, BrasÃlia | 42 | M | A+ | March-07 | 45 | sALS/limb | Yes | 50 mg 2x/day | December 25, 2007 | September 29, 2008 | | Carbonate | Carbolitium | 150 mg 2x/day | 150 mg 3x/day | January 17, 2008 | 300 mg 2x/day | February 19, 2008 | 150 mg 3x/day | March 3, 2008 | 150 mg 2x/day | April 18, 2008 | 150 mg/day | July 6, 2008 | 0.2 | January 4, 2008 | 0.2 | January 16, 2008 | 0.4 | January 31, 2008 | 0.3 | February 18, 2008 | 0.5 | February 25, 2008 | 0.2 | July 18, 2008 | January 31, 2008 | Dry mouth during sleep, slight headache(went away when I started taking lithium just after meals), increased fasciculations | none | 45 | 25 | 25 | 25 | 22 | 22 | 20 | 20 | | | Vit.E 1200mg/day - Vit.B12 subl./day - Ômega3/DHA 1gr/day – start creatine 5gr/day (apr-28-08) - start Mass Hyper Dyn (super calorie) and Nutren Active (jun-06-08) | Physio 3x/week, speech 1x/week, acupuncture 2x/month, nutritionist 1x/month | on rilutek for 12 months, baclofen 20mg/day, memantine 10mg/day since jan 1st (stopped 17/jan), anafranil 50mg/day, vaccine pneumo23 on jan-4-08, diazepam 5mg | Stable! | Stable! | walking becomes difficult and some drooling has appeared | Same as 3rd mth | back to 300 mg/day | same as last mth and stable | . | 2 | Veronica Townsend | USA, Michigan | 38 | F | O+ | November-05 | 42 | sALS | Yes | 50 mg 2x/day | December 26, 2007 | | | Carbonate | | 150 mg 1x/day | 150 mg 2x/day | January 24, 2008 | 150 mg 3x/day | March 18, 2008 | 600 mg/day | May 29, 2008 | | | | | 0.2 | January 9, 2008 | 0.1 | January 16, 2008 | 0.2 | March 10, 2008 | 0.5 | June 10, 2008 | | | | | June 10, 2008 | strong increased urination, increase in fasciculations | none | | 38 | 38 | 38 | 38 | 37 | 37 | 36 | | | | | Had to go off for one week because of frequent/uncontrollable urination. Brought under control with ditropan and Imipramine; back on lithium | | fasciculations next to nothing now | | went off of lithium for two weeks after stressful travel; fascics came back; went back on and fascics went away again | Having a good feeling in hands and arms | | . | 3 | Chris Perdulovski | Australia | 56 | M | | August-07 | 45 | fALS | Yes | 50 mg 2x/day | December 12, 2007 | May 17, 2005 | June 13, 2008 | Carbonate | | 250 mg 3x/day | 250 mg 3x/day | January 10, 2008 | 3 1/2 250 mg/day | January 29, 2008 | 250 mg 4x/day | | 1250 mg/day | May | 500 mg/day | June 13, 2008 | 0.2 | | 0.34 | January 29, 2008 | 0.41 | February 12, 2008 | 0.39 | ? | 0.5 | May, 2008 | | | February 12, 2008 | none | none | 45 | 45 | | 45 | 45 | 47 | | 41 | | | | | on rilutek for 6 months | | | | | stopped lithium on May 17. Was on dosage of 1250 mg/day, blood level 0.5, felt very tired. | | . | 4 | Ferdinand Triemer | Germany | 67 | M | | July-06 | 44 | sALS | Yes | 50 mg 2x/day | December 27, 2007 | June 17, 2008 | | Carbonate | Quilonum R | 200 mg 2x/day | | | | | | | | | | | 0.46 | January 14, 2008 | 0.46 | January 20, 2008 | 0.48 | April 7, 2008 | 0.51 | May 27, 2008 | | | | | January 14, 2008 | increased fasciculations - noticed after two weeks - More weakness in knees, increased urination, irregular bowel movements. Could not tolerate 1250 mg/day dosage
| none | 44 | 35 | 37 | 36 | 35 | | 34 | | | | COQ-10 400MG, VIT-E 400 Mu, Alpha Lipoic Acid 300 MG, VIT-C 100 MG | | on rilutek for 11months | | | | | Stopped on June 17 because no improvement; feels like lithium is making things worse. | | . | 5 | Brian Rintoul | Canada | 52 | M | | April-05 | 40 | sALS | Yes | 50 mg 2x/day | December 22, 2007 | July 18, 2008 | | | | 150 mg 2x/day | 150 mg 3x/day | February 22, 2008 | | | | | | | | | 0.35 | January 10, 2008 | 0.24 | February 11, 2008 | 0.33 | March 3, 2008 | 0.38 | April 14, 2008 | 0.34 | May 14, 2008 | | | | skin irritation like mosquito bites | none | | 10 | 7 | 7 | 7 | 7 | 6 | | | | | | On rilutek 2.5years | | | | | | | . | 6 | Steve B. | USA, California | 61 | M | O- | October-05 | 38 | sALS | Yes | 50 mgqd | December 20, 2007 | | | | | 150 mg bid | 450 mg | | 600 mg/day | March 11, 2008 | | | | | | | 0.4 | January 7, 2008 | 0.3 | February 11, 2008 | 0.5 | March 31, 2008 | | | | | | | January 7, 2008 | much weaker legs | more energy? | 38 | 26 | 25 | 25 | 25 | 25 | 25 | 24 | | | | | Diaphragm Pacer Nov12, 2007 - walking more difficult | | | | hands and neck weaker, breathing stable | FRS same but walking & strength sig. impaired. Increased hypoglycemia, tremor, supplementing diet with ensure. | | . | 7 | Ty Asselsine | USA | 55 | F | | September-06 | 45 | lower MND | No | | December 18, 2007 | March 31, 2008 | | | | 150 mg 2x/day | 600 mg/day | January 8, 2008 | | | | | | | | | <0.2 | | | | | | | | | | | | | no side effects | none | | 40 | 39 | 40 | | | | 35 | | | | | none | | | | | | | . | 8 | David Attard | Malta | 45 | M | | January-07 | 48 | sALS | No | | December 9, 2007 | | | | | 200 mg 2x/day | 300 mg 2x/day | February 9, 2008 | 400 mg/day | March 15, 2008 | 600 mg/day | | | | | | 0.42 | January 9, 2008 | 0.44 | February 19, 2008 | 0.4 | March 15, 2008 | 0.34 | March 25, 2008 | | | | | January 9, 2008 | diarrhea, loss of appetite, fatigue at 600 mg/day; dropped back to 400 mg/day | none | 48 | 30 | | | 25 | | | | | | creatine 1000 mg/cq10 -60 mg/ b12 500mg/ astralagus 1500mg daily | | none | | | | | | | . | 9 | William Hirt | USA | 64 | M | | January-07 | 47 | sALS/Bulbar | Yes | 50 mg 2x/day | November 21, 2007 | | | Carbonate | | 600 mg 1x/day | 750 mg/day | January 7, 2008 | 900 mg/day | January 26, 2008 | 750 mg/day | January 30, 2008 | 900 mg/day | February 12, 2008 | | | 0.3 | | 0.37 | January 18, 2008 | 0.46 | February 1, 2008 | 0.33 | February 11, 2008 | 0.61 | February 25, 2008 | 0.41 | March 3, 2008 | February 1, 2008 | none | less fasciculation? | | 34 | 34 | 35 | 35 | 34 | | 32 | | | Multivitamin, CoQ10, NAC, grapeseed extract, milk thistle, sphingolin, flaxseed oil, fish oil, testosterone injections, HGH, glutathione infusions | | started on 300mg, increased to 450 at 12/12 and to 600 at 12/31 | | | | | | | . | 10 | Hanns Riederer | USA, California | 38 | M | | June-05 | 40 | sALS | No | | December 16, 2007 | | | Carbonate | | 150 mg 2x/day | 450mg | January 15, 2008 | 600mg | February 1, 2008 | 450mg | March 15, 2008 | | | 450mg
| | 0,16 | January 15, 2008 | 0,32 | February 1, 2008 | 0,4 | February 7, 2008 | 0.35 | April 1, 2008 | 0.2 | June 20, 2008 | | | February 7, 2008 | more saliva, more sluring of speech right after taking it | less cramps & spasticity, | 40 | 25 | 25 | 25 | 25 | 24 | 24 | 24 | | | | | none | | | | | |
| . | 11 | David Virden | USA - Mass. | 58 | M | | October-06 | 46 | sALS/Bulbar | Yes | 50 mg 2x/day | December 15, 2007 | April 13, 2008 | | Orotate | Advanced Research | 600 mg 1x/day | 720 mg/day | January 26, 2008 | 840 mg/day | | 720 mg/day | February 15, 2008 | | | | | 0.3 | | 0.3 | February 25, 2008 | | | | | | | | | | at 1200 mg/day had diarrhea, weakness in hands, ill feeling. Better after dropping to 480 mg/day lithium orotate | slite | 46 | 30 | 33 | 34 | 33 | | | 11 | | | | taking 120 mg lithium orotate pills | I started slow on the Lithium at 240mg per day but increased it slowly | | | | stopped lithium while in hospital for 3 weeks for feeding tube and pneumonia | | | . | 12 | Sagit Drishner | Israel | 36 | F | | January-04 | | sALS/Limb | No | | December 24, 2007 | | | | | 300 mg 1x/day | | | | | | | | | | | | | | | | | | | | | | | | Skin irritation, severe itching | right hand digits? | | | | | | | | | | | | | After blood check for Lithium levels, may increase to more than 300 mg/day | | | | | | | . | 13 | Mikko Kehusmaa | Finland | 30 | M | | October-07 | 45 | ALS/Bulbar | No | | January 3, 2008 | | | Carbonate | Lito | 150 mg 2x/day | 150 mg 3x/day | January 17, 2008 | 300 mg 2x/day | February 7, 2008 | 150 mg 4x/day | February 28, 2008 | 150 mg 3x/day | April | | | <0.2 | January 9, 2008 | <0.2 | January 16, 2008 | <0.2 | January 24, 2008 | 0.2 | January 31, 2008 | <0.2 | February 7, 2008 | 0.4 | March 6, 2008 | March 6, 2008 | Non. I had more saliva and more fasciculations at beginning but not anymore. | Better function/power on my legs (can bicycle 10km), better strength in m left hand, better sleep at night, more energy | 45 | 39 | 42 | 44 | 44 | 42 | 40 | 37 | | | | Physio 1x/week, speech 1x/week, voice massage 1x/week | After two blood check, increase the dose to 3x150mg/day at 17.1.2008 (orginal 2x150mg/day) | | | My speech has been little bit slurred but I think that its because there has been long delays in my voice massage therapy. Also my fingers has been more stiff but my FRS score is still 44 and no side effects. | worse clonus and hands. Excess saliva problem decreased after lowering dosage to 150 mg 3x.day | changing between doses of 300 /450 mg/day, blood level around 0.2 - 0.3 | | . | 14 | Jim Mong | USA, Michigan | 59 | M | | September-07 | 45 | sALS/Bulbar | Yes | 50 mg 2x/day | December 21, 2007 | | | Carbonate | Roxane | 150 mg 3x/day | 150 mg 3x/day | January 16, 2008 | 450 mg 2x/day | January 25, 2008 | | | | | | | 0.2 | January 9, 2008 | 0.2 | January 25, 2008 | 0.4 | January 6, 2008 | | | | | | | January 6, 2008 | increased saliva and fasciculation, taste in mouth | slight imprv. In R foot | 45 | 39 | 39 | 39 | | | | | | | Vit - B cmplx, B12, C1000, D, E, Omega/3 3000mg, CoQ10 1200, Multi Min, DMAE, HGH, Glyconutrient | Stretching exercising @ home, massage therapy 2x/mo chiropractor 2/wk | Starting 450mm today, 150 3x/day 1/11/08 | | Feels weaker but not by a full ALSFRS-R point | | | | | . | 15 | Edward W. Esparza | USA, Chicago | 49 | M | | September-05 | | sALS | No | | December 19, 2007 | March 19, 2008 | | Carbonate | | 150 mg 1x/day | | | | | | | | | | | | | | | | | | | | | | | | dry mouth during sleep-? | maybe, not sure-? | | | | | | | | | | | | | expected increase to 300mg dailyafter next week's M.D. appointment | | | Stopped lithium due to breathing diffficulties and nausea | | | | . | 16 | EJW | USA, Montana | 46 | F | O+ | December-06 | 47 | sALS/Limb | No | | February 29, 2008 | | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | April 8, 2008 | | | | | | | | | 0.4 | March 12, 2008 | 0.3 | April 3, 2008 | 0.4 | April 23, 2008 | | | | | | | March 12, 2008 | Dry mouth during the night and muscle cramps -- no more dry mouth or muscle cramps | more flexibility and function in fingers and toes | 47 | 39 | 40 | 39 | 35 | 37 | 37 | | | | CoQ10 800 mg/day, Vitamin E, 1000 mg/day, Vit C, 200 mg/day, Alpha lipoic acid, 300 mg/day, ferrous gluconate 100 mg/day, vitamin B12, vicodin 500 | Physical Therapy 1x/week | none | bit of improvement in hands, can wiggle toes and move feet slightly. | | | am able to anke to move a bit now, toes are moving more and without effort. | | | . | 17 | Bill Hern | USA, MN | 51 | M | | November-06 | 47 | | Yes | 50 mg 2x/day
| December 9, 2007 | | | | | 300 mg 2x/day | | | | | | | | | | | 0.7 | December 15, 2007 | 0.55 | January 22, 2008 | | | | | | | | | December 15, 2007 | | | 47 | 29 | 29 | 29 | 29 | 29 | 29 | | | | | | pseudo-bulbar ALS -- more upper neuron involvement | | | | | | | . | 18 | SRAL | Canada | 63 | F | | August-07 | 43 | UMND/bulbar | No | | January 6, 2008 | June 28, 2008 | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | January 22, 2008 | 150 mg 4x/day
| February 11, 2008 | 450 mg/day | April 5, 2008 | | | | | 0.2 | January 12, 2008 | >0.2 | January 18, 2008 | 0.2 | February 5, 2008 | 0.38 | March 24, 3008 | | | | | | increased fatigue on 1st day and continued increased saliva | none | 43 | 41 | 40 | 40 | 40 | 40 | 40 | 40 | | | vit E 800mg/day, vit B12 subl/day, vit D 1000mg/day, vit C, milk thistle | strength exercises at home | | | slower and stair climbing harder but not full FRS pt | | same FRS but slower and muscle loss in calves | Lithium stopped because not effective at slowing progression | | . | 19 | APF | USA - California | 63 | M | | August 2007 | 46 | sALS/limb | No | | January 4, 2008 | June 20, 2008 | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | January 18, 2008 | 150 mg 4x/day | January 30, 2008 | 750 mg/day | February 5, 2008 | 900 mg/day | February 12, 2008 | 600 mg/day | May 9, 2008 | 0.19 | January 14, 2008 | 0.24 | January 23, 2008 | 0.32 | February 4, 2008 | 0.38 | February 11, 2008 | 0.42 | February 18, 2008 | 0.52 | February 26, 2008 | February 18, 2008 | foot pain on first day | none | 46 | 40 | 39 | 37 | 36 | 34 | 28 | 28 | | | none | | | | | | | Tapering lithium down by 150 mg/week starting June 4, 2008, after consultation with doctor -- lithium not working. | |
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| | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | . | 20 | Jill C. | USA | 59 | F | | June 2006 | 45 | sALS/bulbar | No | | December 5, 2007 | April 7, 2008 | April 25, 2008 | Carbonate | | 150 mg 2x/day | 450 mg/day | January | 300 mg/day | February 16, 2008 | | | | | | | 0.3 | January 8, 2008 | 0.9 | February 8, 2008 | 0.3 | March 21, 2008 | 0.4 | March 24, 2008 | | | | | February 8, 2008 | none | | | | 43 | 41 | 40 | 40 | 39 | 40 | | | | | | | | | increased swallowing dif; temporarily stopping Li | | | . | 21 | Guenther B. | Germany | 55 | M | A+ | January 2007 | 45 | | Yes | 50 mg 2x/day | January 9, 2008 | | | Carbonate | Hypnorex retard | 200 mg 2x/day | 400 mg 2x/day | January 30,2008 | 400 mg 2x/day | February 13,2008 | 1200 mg/day | March 5, 2008 | 1200 mg/day | April 9, 2008 | 1200 mg/day | 1000 mg/day | 0.23 | January 29,2008 | 0.42 | February 13,2008 | 0.38 | March 4,2008 | 0,6 | March 27, 2008 | 0,51 | April 11,2008 | December 30, 1899 | May 24, 2008 | February 13, 2008 | slight trempling of the hands | none | 45 | 45 | 45 | 45 | 43 | 43 | 43 | 42 | | | vit E 1000mg/day | physio 2x/week | | | | | | | | . | 22 | David Saunders | USA/New Jersey | 44 | M | A+ | March 2007 | 48 | sALS/limb | No | | January 10, 2008 | | | Carbonate | | 150 mg 2x/day | 300 mg 2x/day | January 23,2008 | 300 mg 2x/day | February 20,2008 | 300 mg 2x/day | March 17, 2008 | 300 mg/day | May 21, 2008 | | | <.01 | January 22,2008 | 0.3 | January 30, 2008 | 0.5 | February 20, 2008 | 0.5 | March 17, 2008 | | | | | February 20, 2008 | Itchy Feet, low thyroid - need to see Dr. and increase synthroid | More energy, overall improvment | 48 | 39 | 39 | 39 | 36 | 33 | 33 | | | | CoQ10, Vit E, Multi Vit, Synthroid, Vit C, | Physio 2x / week, Home exersise, accupuncture, streaching | | | feel overall good, minor side effects are gone | feet swelling | feet very swollen and purple. Decreased swelling after lowering dose from 600 to 300 mg/day. Breathing worsened over last 6 months. | Cut down to 300/day for two weeks, now back up to 600/day. Feet swollen. | | . | 23 | AlbertSweden | Sweden | 58 | M | | Sept. 2006 | 44 | sALS/bulbar | Yes | 50 mg 2x/day
| January 10, 2008 | | | Sulphate | Lithionit | 42 mg/day | 42 mg 2x/day | January 17, 2008 | 42 mg 3x/day | January 30, 2008 | 4 x 42 mg/day | February 8, 2008 | 5 x 42 mg/day | March 3, 2008 | | | 0.1 | January 17, 2008 | 0.2 | January 30, 2008 | 0.3 | February 8, 2008 | 0.3 | February 27, 2008 | 0.6 | March 18, 2008 | 0.6 | March 18, 2009 | March 18, 2008 | loose bowel movements at dose increase | none | 44 | 22 | 22 | 21 | 19 | 15 | | | | | CoQ10 600mg/day | | adjusting dose right now ; in this country LiSulphate has replaced LiCarbonate | | | | | | We are sad to report that Albert passed away on August 1, 2008 | . | 24 | William Christophersen | Australia | 71 | M | | April 2007 | 45 | MND/Bulbar | Yes | 50 mg 2x/day
| January 15th 2008 | March 25, 2008 | | Carbonate | | 150 mg 2x/day | 250 mg 2x/day | February 18,2008 | | | | | | | | | 0.32 | January 22, 2008 | 0.22 | February 12, 2008 | 0.3 | February 17, 2008 | 0.4 | February 26, 2008 | 0.5 | March 7, 2008 | | | February 26, 2008 | | | 45 | 32 | 30 | 30 | | | | | | | Rilutek 7 months, CoQ10, tamoxifen, E, C (not taking C, E, Tamoxifen or C0Q10 at the moment - awaiting PEG 3 months) | | 1st month ALSFRS went down by 2 due to having a PEG put in, was on a waiting list for 3 months for this, condition is static. | | Sad to report passed away Mar. 25, 2008 | | | | | . | 25 | Leo G. | USA-California | 62 | M | | August-06 | 44 | sALS/bulbar | Yes | 50 mg 2x/day
| January 17, 2008 | February 9, 2008 | | | | 150 mg 2x/day | 250 mg 2x/day | February 19, 2008 | | | | | | | | | 0.4 | January 23, 2008 | 0.3 | February 18, 2008 | | | | | | | | | January 23, 2008 | | | 44 | 26 | | | | | | | | | namenda,remeron,cymbalta,prednisone,endocort,synthroid,hydrocodone,provigil,creatine,d-ribose,trehalose,gingko | | We are sad to report that Leo G. passed away on unexpectedly on February 9, 2008 | | | | | | | . | 26 | Susan T. | USA-NC | 70 | F | | May-06 | 33 | sALS/limb | No | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | . | 27 | JohnW | Canada | 61 | M | | October-00 | 42 | sALS/bulbar | Yes
| 50 mg 2x/day
| January 14, 2008 | | | Carbonate | APO? | 150 mg 2x/day | 150 mg 3x/day | March 26, 2008 | | | | | | | | | <0.1 | January 24, 2008 | 0.3 | March 10, 2008 | 0.11 | April 30, 2008 | 0.48 | June 13, 2008 | | | | | June 13, 2008 | increased fatigue, slight appetite loss, nausea, and diarrhea, gone after two months | | 42 | 31 | 32 | 32 | 32 | 32 | 32 | 32 | | | Vits C (1500 mg),D (2000 mg),E(1600 IU),CoQ10 (800 mg),grape seed extract, allopurinol, Celebrex (200 mg) multivitamin, milk thistle | | | | | arms and hands painful in the morning (was happening before starting lithium) | diarrhea is gone | some loss of fine motor control, but not enough for an ALSFRS-R point drop | | . | 28 | Cathy R. | Canada | 56 | F | O- | November 2004 | 47 | sALS/limb | No | | January 16, 2008 | | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | January 28, 2008 | 300 mg 2x/day | February 11, 2004 | 300 mg/day | April 15, 2008 | | | | | 0.29 | January 23, 2008 | 0.49 | February 4, 2008 | 0.35 | February 11, 2008 | 0.47 | March 3, 2008 | 0.54 | April 1, 2008 | 0.47 | June 26, 2008 | February 4, 2008 | N/A | N/A | 47 | 28 | 28 | 29 | 29 | 28 | 29 | 27 | | | Effexor, Alpha lipoic, MSM, Milk Thistle, Probiotics, Vitamin E, Calcium, Omega 3 Fish Oil | | | | | | | | | . | 29 | Sharon F. | USA-Nebraska | 53 | F | A+ | January-06 | 46 | fALS/limb | Yes
| 50 mg 2x/day
| January 17, 2008 | | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | January 22, 2008 | 150 mg 4x/day | February 8, 2008 | 150 mg 3x/day | February 20, 2008 | | | | | 0.3 | January 22, 2008 | 0.3 | February 8, 2008 | 0.5 | February 20, 2008 | | | | | | | February 20, 2008 | | | 46 | 31 | 28 | | 30 | | | 23 | | | juice plus, CoQ10 | | | | | | | | | . | 30 | ENV | | 39 | M | | March 2005 | | sALS/limb | Yes | 50 mg 2x/day
| February 4, 2008 | | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | February 14, 2008 | 900 mg/day | April 2, 2008 | 1200 mg/day | <May 13 | | | | | 0.27 | February 14, 2008 | 0.4 | April 2, 2008 | 0.4 | ? | | | | | | | April 2, 2008 | | none | | 24 | 20 | 20 | 20 | 20 | | | 17 | 9/26/2008 | | | | | | | | | spent month in hospital; on trach | . | 31 | Jeff C. | USA/Georgia | 48 | M | | November 2006 | 48 | sALS/limb | Yes
| | December 21, 2007 | March 2, 2008 | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | January 17, 2008 | 150 mg 4x/day | February 13, 2008 | | | | | | | 0.11 | January 11, 2008 | 0.1 | April 2, 2008 | 0.3 | February 22, 2008 | | | | | | | | Weakness, nausea, urgency of urination, diarrhea | | 48 | 39 | 39 | 39 | | | | | | | Baclofen, Norvasc | | Lithium discontinued on March 2, 2008 because of side effects | | | | | | | . | 32 | Livio V. | Italy | 64 | M | | June 2007 | 46 | sALS/limb | Yes | 50 mg 2x/day
| December 28, 2007 | | | Carbonate | Carbolithium | 150 mg 2x/day | 150 mg 3x/day | January 23, 2008 | 150 mg 4x/day | March 6, 2008 | 150 mg 3x/day | April 29, 2008 | | | | | 0.2 | January 5, 2008 | 0.23 | January 22, 2008 | 0.29 | February 16, 2008 | 0.34 | February 16, 2008 | 0.32 | April 22, 2008 | | | | Maybe more fatigue and for sure reappearing fasciculations after 4 months of absence | none | 46 | 43 | 43 | 43 | 43 | 42 | 42 | 42 | | | Co Q10 - Acetil L Carnitine - Eritromicin - Vitamin E | Phisio 3x/week , Home Exercise | | | | | slight hand tremor | | slight hand tremor + increased catarrh | . | 33 | Patricia J. | USA/Iowa | 67 | F | | May-07 | 47 | sALS/bulbar | No | | January 17, 2008 | March 22, 2008 | | Carbonate | | 300 mg/day | | | | | | | | | | | 0.3 | February 8, 2008 | | | | | | | | | | | | none yet | | 47 | 41 | | | | | | | | | BNG (Chinese herbs), CoQ10, Shaklee multiple vitamins, glucosamine chondroitin, lecithin | | March 22, 2008: PALS in hospital with bad cough and cold and has DISCONTINUED LITHIUM | | | | | | | . | 34 | Todd K | USA - Tennessee | 45 | M | | January-06 | 48 | sALS/limb | No | | January 10, 2008 | April 16, 2008 | | Carbonate | | 150 mg 3x/day | 150 mg 2x/day | January 18, 2008 | 150 mg 3x/day | February 8, 2008 | 600 mg/day
| March 5, 2008 | 900 mg/day | April 9, 2008 | | | <0.3 | February 4, 2008 | <0.3 | March 4, 2008 | <0.3 | April 7, 2008 | | | | | | | | | | 48 | | 21 | 21 | 21 | | | | | | | | | | | Even though my FVC has remained the same there is no doubt I have continued to progress | At 600 mg/day lots of weakness; much more at 900 mg/day; stopped lithium on April 16. FVC declined at 71% of previous rate while on lithium. | | | . | 35 | Torres E. | Spain | 54 | M | | February-05 | 45 | fALS/limb | Yes | 50 mg 2x/day
| | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | 45 | 28 | | | | | | | | | Vitamin E, Nucleo CMP Forte - Treated with stem cells in X-Cell Center (17-january) (some improvements in first week) | | | | | | | | | . | 36 | Carrol P. | | 61 | F | | Fall 2005 | 46 | sALS/limb | | | January 12, 2008 | February 21, 2008 | March 4, 2008 | Carbonate | | 150 mg 2x/day | | | | | | | | | | | 0.35 | January 22, 2008 | 0.6 | May 20, 2008 | | | | | | | | | May 20, 2008 ? | losing hair; pre-existing Hashimoto's thyroid | | 46 | | | | | | | | | | multivitamin, vit C, vit D cream, magnesium, b12 shots, folic acid shots, hgh, probiotics, omega 3, b complex, greens (powdered) | | | | stopped lithium when hospitalized for panic attack on Feb. 21. Resumed lithium & out of hospital on March 4. | | sudden increase in weakness week of May 19, 2008. | | | . | 37 | ilgal | | 58 | F | | July 2007 | 43 | sALS/bulbar | No | | January 23, 2008 | | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | January 31, 2008 | | | | | | | | | 0.3 | January 28, 2008 | 0.6 | February 11, 2008 | 0.6 | March 10, 2008 | 0.6 | May 15, 2008 | | | | | February 11, 2008 | none | | 43 | 38 | 36 | 35 | 34 | 34 | 32 | | 27 | 9/19/2008 | Quinidine/dextromethorphan, prempro, levothyroxine, toprol, multivitamin, glucosamine, calcium. Vitamin C, Vitamine E, B complex, tylenol PM, ceftriaxone or placebo (clinical trial) | | | | | | | | | . | 38 | Nobregapaulo7 | Brazil | 47 | M | | July-05 | 48 | sALS/limb | Yes | 50 mg 2x/day
| December 10, 2007 | | | Carbonate | | 150 mg 2x/day | 300 mg 2x/day | February 23, 2008 | | | | | | | | | 0.6 | December 25, 2007 | 0.5 | February 11, 2008 | 0.3 | February 22, 2008 | 0.5 | March 20, 2008 | | | 0.5 | March 20, 2008 | December 25, 2007 | none | | 48 | 23 | 23 | 23 | 23 | 22 | 22 | 22 | | | vit.E, vit.C, amitriptilina e baclofen | | | | | Feels weaker but not by a full ALSFRS-R point | | | | . | 39 | Mark M. | | 60 | M | | May 2006 | 47 | sALS/bulbar | Yes | | January 22, 2008 | March 25, 2008 | | liquid carbonate | | 50 ml (300 mg)/day | 75 ml (450 mg) | February 12, 2008 | | | | | | | | | 0.3 | February 11, 2008 | 0.7 | March 17, 2008 | | | | | | | | | March 17, 2008 | hand tremor, some digestion problems, hypothyroidism (being treated) | | 47 | 37 | 36 | 37 | 33 | 34 | | 31 | | | | | | | increased arm weakness but not enough for FRS drop | | | | |
|
| | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | . | 40 | HSedg | USA | 39 | F | | Fall 2005 | 48 | sALS/limb | No | | January 23, 2008 | March 23, 2008 | | Carbonate | Roxane | 150 mg 2x/day | 300 mg 2x/day | | 750 mg/day | February 19, 2008 | | | | | | | 0.12 | February 8, 2008 | 0.33 | February 16, 2008 | 0.52 | February 26, 2008 | | | | | | | February 26, 2008 | | | 48 | 38 | 38 | | | | | | | | | | | | Stopped after two months on lithium due to extreme diarrhea | | | | | . | 41 | Charlotte C. Michaud | | 54 | F | | November-05 | 40 | sALS/limb | Yes | | January 24, 2008 | April 27, 2008 | | Carbonate | | 150 mg 2x/day | | | | | | | | | | | | | | | | | | | | | | | | none | | 40 | 12 | 15 | | | | | 4 | | | Rilutek, Baclofen, Benicar, Sertaline, Tylenol, Fexofenadine, Omeprazole | | | | | Stopped lithium due to increased breathing difficulties. | | | Charlotte is out of the hospital and on a vent | . | 42 | James Eldridge | USA | 47 | M | | January-03 | 48 | sALS/bulbar/limb | Yes | 50 mg 2x/day
| January 27, 2008 | | | Carbonate | Roxane | 150 mg 1x/day | 150 mg 2x/day | February 4, 2008 | 150 mg 3x/day | February 21, 2008 | 300 mg 2x/day | | | | | | 0.3 | February 4, 2008 | 0.29 | February 18, 2008 | 0.39 | March 4, 2008 | 0.36 | April 16, 2008 | | | | | | Depression and itchy skin are gone. Still thirsty, still extra drool, Slight extra fasciculations (reduced since last report) | Cramping disappeared after start of Li. Cramping has gotten a little worse in the last week. No change noticed in condition (score) | 48 | 40 | 40 | 40 | 40 | 40 | 40 | 41 | | | | | Bulbar and limb symptoms were simultaneous, I am a very slow progressor | | | Feels good, all side effects gone | experiencing excess saliva, extra drooling | excessive saliva | mild excessive drooling | . | 43 | fanappel | Sweden | 43 | M | | May-04 | 42 | sALS/limb | Yes | 50 mg 2x/day
| January 30, 2008 | | | Sulphate | | 21 mg 4x/day | 21 mg 5x/day | February 6, 2008 | 2*42+2*21 mg/day | February 20, 2008 | | | | | | | 0.3 | February 6, 2008 | 0,4 | February 13, 2008 | 0.4 | February 20, 2008 | 0.5 | February 27, 2008 | 0.5 | March 26, 2008 | 0.5 | June 4, 2008 | February 13, 2008 | none | | 42 | 1 | 1 | 1 | 1 | 1 | 1 | | | | Rilutek + acetylcystein | | | | | | | | | . | 44 | Jim Zelos | Australia | 69 | M | | August 2005 | 46 | sALS/limb | Yes | 50 mg 2x/day
| January 16, 2008 | | | Carbonate | | 1/2 250 mg tab 2x/day | 90 mg 3x/day | February 16, 2008 | 175 mg 2x/day | March 2, 2008 | 250 mg 2x/day | April 8, 2008 | | | | | 0,3 | February 14, 2008 | 0.3 | April 3, 2008 | 0.4 | June 6, 2008 | | | | | | | June 6, 2008 | urgency to urinate and occasional loose bowel movements | | 46 | 34 | 34 | 34 | 32 | 32 | 32 | 30 | | | zyloprim,betaloc,avapro,baclofen,multivitamin,B12 1000mg/day,folic acid, CoQ10 400mg 2x/day,milk thistle 400 mg/day, fish oil 1000mg 3x/day glucosamine sulfate 1500 mg | | | | | side effects eased a bit, no diarrhea. In hospital with deep vein thrombosis; started blood thinner. | | | | . | 45 | Gary Jensen | USA | 62 | M | | March 2007 | | sALS/limb | Yes | 50 mg 2x/day | January 31, 2008 | | | Capsules | | 150 mg 2x/day | 150 mg 3x/day | February 18, 2008 | 600 mg/day | April 2, 2008 | | | | | | | 0.25 | February 7, 2008 | 0.44 | February 26, 2008 | 0.33 | March 25, 2008 | 0.33 | April 1, 2008 | 0.5 | April 24, 2008 | | | February 26, 2008 | decreased thyroid -- on thyroid medication | | | 35 | 31 | 33 | 31 | | 24 | 24 | | | ,Levothyroxin,Crestor,Zetia,Naltrextone,Doxazosin,Fluticasone,Astelin,asperin,RenewPro,N-Acetyl Cysteine,ReadiSorb,Biotin,Cinnamon,DHEA Plus,Fish Oil Concentrate..., | | | | | | | | Reducing lithium since it doesn't seem to be doing any good. | . | 46 | Poniek | Poland | 45 | M | | October-03 | 48 | sALS/limb | No | | February 1, 2008 | April 1, 2008 | | Carbonicum | | 125 mg 2x/day | 250 mg 2x/day | February 25, 2008 | | | | | | | | | <0.2 | February 25, 2008 | | | | | | | | | | | | I feel weaker, not sure whether because of lithium or another reason. | none | 48 | 33 | 33 | | | | | | | | Nothing at this moment | | | | | | | | | . | 47 | Michael Finley | USA/Washington | 39 | M | | May-06 | | sALS | No | | December 14, 2007 | | | Carbonate | | 250 mg 1x/day | | | | | | | | | | | | | | | | | | | | | | | | none | none | | 11 | | | | | | | | | | | hope for stabilization (FRS=11) | | | | | | | . | 48 | AHands | USA/N. Carolina | 44 | M | | November 2007 | 42 | sALS/limb | Yes | | February 6, 2008 | May 21, 2008 | | Carbonate | generic | 150 mg 1x/day | 150 mg 2x/day | February 9, 2008 | 150 mg 3x/day | February 15, 2008 | 150 mg 4x/day | April 3, 2008 | 150 mg 6x/day | May 6, 2008 | | | 0.1 | February 14, 2008 | 0.2 | February 21, 2008 | 0.3 | February 29, 2008 | 0.2 | March 20, 2008 | 0.2 | April 19, 2008 | 0.4 | May 21, 2008 | May 21, 2008 | temporary (48 hours) depression after increasing dosage | No longer cramping in bed | 42 | 41 | 41 | 41 | 40 | 40 | | | 37 | 9/19/2008 | Alpha Lipoic, CoQ10, Various Antioxidants, Vitamins and Supplements | bicycling (on road) | atrophy in left hand, 2/05, atrophy in right hand fall '07 | | Feeling lousy (as of April 19, 2008) | FVC dropped to 67% (in May). Was 100% in November. I quickly run out of air when bicycling up hill. Pruitic (itchy) rash on feet for last week. | | | | . | 49 | GabrielP | | 62 | M | | January 2007 | 43 | sALS/limb | No | | January 31, 2008 | July 6, 2008 | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | Februay 7, 2008 | 150 mg 4x/day | Februay 14, 2008 | 150 mg 5x/day | February 28, 2008 | 900 mg/day | March 16, 2008 | 300 mg/day | July 3, 2008 | 0.14 | February 5, 2008 | 0.26 | February 12, 2008 | 0.24 | February 26, 2008 | 0.27 | March 6, 2008 | 0.44 | March 26, 3008 | 0.53 | May 22, 2008 | March 26, 2008 | slight appetite loss and occasional constipation | | 43 | 36 | 36 | 35 | 34 | 32 | 32 | | 30 | 9/21/2008 | Co-Q10(1300 mg), creatine, resveratrol, Vit C, B complex, D | | | | | went down to 750 mg/day then back to 900. Experiencing slight appetite loss and occasional constipation. | | Currently reducing lithium dose by 100 mg/week bec. experiencing appetite loss, fatigue, and constipation. | Stopped lithium. After stopping regained appetite and fatigue is less prounounced | . | 50 | SharonCa | | 58 | F | | December-07 | 43 | sALS/limb | No | | February 1, 2008 | September 4, 2008 | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | February 9, 2008 | 600 mg/day | March 5, 2008 | 450 mg/day | April 1, 2008 | | | | | 0.2 | February 7, 2008 | 0.4 | February 15, 2008 | 0.3 | February 21, 2008 | 0.2 | March 5, 2008 | 0.4 | May 20, 2008 | 0.5 | July 9, 2008 | April 1, 2008 | | painful cramping in legs stopped; painful cramping in hands much diminished | 43 | 39 | 40 | 40 | 40 | 40 | 40 | | | | none | | | | | Still at FRS 40 but legs are weaker. Using walker in the house. | | | discontinued lithium because of severe kidney infection | . | 51 | GSchoenfeld | USA | 53 | M | | August 2006 | 47 | sALS/limb | No | | February 2, 2008 | | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | February 19, 2008 | 300 mg 2x/day | March 5, 2008 | | | | | | | 0.2 | February 8, 2008 | 0.3 | February 29, 2008 | 0.4 | March | | | | | | | ~March 15, 2008 | | | 47 | 25 | 26 | | | 18 | | | | | small doses of Zoloft | | Gulf War ALS | | | | Some loss of hair | | | . | 52 | mgparkcity | | 57 | M | | September 2006 | | sALS/limb | Yes | | January 17, 2007 | | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | Feburary 1, 2008 | 750 mg/day | February 15, 2008 | 300 mg 3x/day | March 18, 2008 | 600 mg/day | June 2008 | | | 0.2 | January 24, 2008 | <0.2 | January 31, 2008 | 0.2 | February 15, 2008 | 0.3 | February 26, 2008 | 0.5 | May 7, 2008 | 0.3 | June 18, 2008 | May 7, 2008 | increased weakness and slurring - swollen feet; occasional slurred speech | | | 45 | 44 | 45 | 43 | 42 | 42 | | | | norvasc, qualaquin, clozanapam | | | | | Slurring of speech, whcih is either ALS related or due to lithium. | hands and arms weakened considerably over past two months | Reduced dose from 900 to 600 mg/day to reduce slurred speech. ALS prog. continues, inc. weakness in hands & arms. | | . | 53 | BWiss | | 49 | F | | January 2007 | 41 | sALS/limb | No | | January 31, 2008 | May 4, 2008 | | Carbonate | | 150 mg 2x/day | 450 mg/day | March 17, 2008 | 300 mg 2x/day | | | | | | | | 0.2 | February 28, 2008 | 0.2 | March 13, 2008 | | | | | | | | | | headache | | 41 | 26 | 26 | 25 | | | | 15 | | | NoAtenenol, Zithromax, Mepron | | on antibiotic for lyme disease | | | | | | | . | 54 | Rendad | USA | 46 | F | | October-07 | 48 | sALS/bulbar | Yes | 50 mg 2x/day
| February 2, 2008 | | | Carbonate | | 300 mg 2x/day | | | | | | | | | | | 0.5 | March 10, 2008 | | | | | | | | | | | March 10, 2008 | none yet | | 48 | 37 | | 32 | | | | | | | Vitamin E, Selenium, CoQ10, Glyconutirients, Vitamin C, Creatine, Gluthathione, Multi-vitamin | | | | increased progression rate? | went on trach and ventilator on May 13, 2008. Still taking lithium. | | | | . | 55 | Hoody | USA, California | 42 | M | | April-06 | 47 | sALS/bulbar | Yes | 50 mg 2x/day
| February 3, 2008 | | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | February 21, 2008 | 300 mg 2x/day | March 18, 2008 | | | | | | | 0.2 | February 8, 2008 | 0.2 | February 15, 2008 | 0.3 | February 28, 2008 | 0.2 | March 6, 2008 | 0.4 | March 25, 2008 | 0.5 | June 5, 2008 | March 25, 2008 | possibly increased fasciculation, particularly in neck and nose (never had fasciculations in nose before starting Lithium) | | 47 | 17 | 17 | 15 | 15 | 13 | 13 | | | | Baclofen, Rilutek, Welbutrin, Nutropin, Diazepam, Ambien CR, Docusate Sodium, Multivitamin | | | | Slight increased fasciculations | feeling fatigue | | continued increase in fasciculations | | . | 56 | Steve Green | USA, California | 43 | M | | January-04 | 46 | sALS/bulbar | Yes | 50 mg 2x/day
| February 4, 2008 | | | Carbonate | Roxana | 150 mg 2x/day | 600 mg/day | | | | | | | | | | 0.3 | | | | | | | | | | | | | none | | 46 | 36 | 36 | 37 | | | | | 32 | 8/29/2008 | | | | | | | | | | . | 57 | FightingMom | USA | 32 | M | | March-07 | 48 | sALS/limb | Yes | 50 mg 2x/day
| January 1, 2008 | | | Carbonate | | 300 mg 2x/day | | | | | | | | | | | 0.2 | January 10, 2008 | 0.23 | January 28, 2008 | 0.1 | April 7, 2008 | | | | | | | | none | previously severe fasciculations dramatically slowed, speech appears better | 48 | 33 | 33 | 33 | 33 | 30 | | | | | Increlex, Enalapril, Milk Thstle, DHA, multi, NAC, creatine, alpha lipoic, resveratrol, trocetrenol, omegas, etc... | | Added choline to help boost lithium levels | | | In last month fewer fasciculations, "looks healthier", ALSFRS-R is still 33 but a "higher 33" | | limb weakness has progressed, but fascics still undetectable | | . | 58 | JCC | | 64 | M | | February 2007 | 47 | sALS/limb | Yes | | February 1, 2008 | | | Carbonate | | 300 mg/day | 300 mg 2x/day | February 19, 2008 | 900 mg/day | March 5, 2008 | 600 mg/day | March 19, 2008 | 450 mg/day | April 17, 2008 | | | 0.21 | February 8, 2008 | 0.35 | February 25, 2008 | 0.53 | March 10, 2008 | 0.38 | March 25, 2008 | 0.34 | April 7, 2008 | 0.32 | July 22, 2008 | March 10, 2008 | No | none | 47 | 41 | 41 | 41 | 41 | 40 | 39 | 39 | | | Vitamin D and Alpha-lipoic acid, 200 mg/day | | lower motor neuron MND only | | rilutek added on March 20 | | | | | . | 59 | Russ Conley | USA, California | 63 | M | | November-06 | 42 | sALS/limb | Yes | 50 mg 2x/day
| February 2, 2008 | June 15, 2008 | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | February 8, 2008 | 150 mg 4x/day | February 15, 2008 | 150 mg 3x/day | February 21, 2008 | | | | | 0.3 | February 8, 2008 | 0.3 | February 13, 2008 | 0.5 | February 19, 2008 | 0.4 | February 27, 2008 | 0.4 | March 6, 2008 | 0.4 | May 14, 2008 | February 19, 2008 | weight gain aftr two months (~ 10 pounds) | | 42 | 39 | 38 | 38 | 39 | 38 | | | | | AM: Hydrochlorothiazide 25mg, Aciphex 20mg, Synthroid 0.125mg, Lexapro 10mg, Lipitor 10 mg PM: Baclofen 10mg, Amitriptyline 50mg, Zolpidem 10mg, Clonazepam 0.5mg, CoQ10 300mg 2x day, E 400, C 500, Omaga 3 1000, Folic acid 400 | | | | | I can't point to any improvement and the only progression may be in the lower FVC, but I started Lithium in between FVC tests so can't say for sure. | Sometimes feels like brain fog; usually drinking more water solves the problem. | Stopped lithium; breathing was down two consecutive times after starting lithium | |
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| | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | . | 60 | Mark O. | USA, Minnesota | 43 | M | | July-06 | 44 | sALS | Yes | 50 mg 2x/day
| January 30, 2008 | | | Carbonate | | 300 mg/day | 150 mg 3x/day | February 19, 2008 | 600 mg/day | February 27, 2008 | | | | | | | 0.21 | February 18, 2008 | 0.3 | February 27, 2008 | 0.46 | March 12, 2008 | 0.5 | March 26, 2008 | | | | | March 12, 2008 | increased saliva | | 44 | 35 | 35 | 35 | | | | | | | Multi-vitamin | | | | | | | | | . | 61 | ashamp | | 73 | F | | November-06 | 37 | sALS/limb | Yes | 50 mg 2x/day
| January 31, 2008 | | | Carbonate | | 150 mg 2x/day | | | | | | | | | | | 0.45 | February 19, 2008 | | | | | | | | | | | February 19, 2008 | rash (gone) | | 37 | 32 | 33 | 32 | 32 | 31 | 27 | 27 | | | creatinine, vitamin b1 and b12, turmeric, COQ10, mycardis hcl, time-release magnesium, multi-vitamin, and fish oil | | | | | | | | | . | 62 | VCM | CANADA | 41 | F | O+ | December 2007 | 45 | sALS/limb | No | | February 7, 2008 | | | Carbonate | Apo Lithium | 150 mg 2x/day | 150 mg 3x/day | February 28, 2008 | 600 mg/day | March | 450 mg/day | April 9, 2008 | 300 mg/day | April 18, 2008 | 150 mg/day | September, 2008 | 0.2 | February 25, 2008 | | | | | | | | | | | | One week with increase fasciculation, none after | | 45 | 44 | 44 | 43 | 42 | 40 | | 31 | | | -Baclofen 20mg a day -vit B12 1000mcg/day, E 400 iu /day -Zinc 20mg/week | | | | | Diagnosed with papillary thyroid cancer on April 18. Dropped dose to 300 mg/day. | Operated on for thyroid cancer. Remains on lithium. | | | . | 63 | Rick_61 | | 55 | M | | January 2008 | 47 | sALS/limb | Yes | 50 mg 2x/day
| February 5, 2008 | | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | February 14, 2008 | 300 mg 2x/day | February 21, 2008 | 450 mg 2x/day | March 4, 2008 | | | | | 0.2 | February 12, 2008 | 0.3 | February 21, 2008 | 0.3 | March 3, 2008 | 0.7 | March 11, 2008 | | | | | March 11, 2008 | mild constipation | | 47 | 47 | 47 | 47 | 47 | 47 | 47 | | | | | | general MND diagnosis -- not clear ALS yet | | | | | | | . | 64 | LeeO | | 50 | M | | September-06 | 47 | sALS/bulbar | No | | February 2, 2008 | April 12, 2008 | | Carbonate | | 150 mg 2x/day | 300 mg 2x/day | February 28, 2008 | | | | | | | | | 0.2 | February 18, 2008 | | | | | | | | | | | | reaction to paxil | swallowing better | 47 | 12 | 12 | | | | | | 6 | 9/18/2008 | naproxen, gabapenton, ibuphrophen, paxil, prilosec. | | | | | | | | | . | 65 | ashfieb | UK | 62 | M | | April-05 | 46 | sALS/limb | Yes | 50 mg 2x/day
| December 22, 2007 | April 16, 2008 | | Carbonate | Plenur | 130 mg 3x/day | 300 mg/day | March 14, 2008 | 400 mg/day | April 2, 2008 | | | | | | | 0.23 | April 2, 2008 | | | | | | | | | | | | some fasciculations, but not as bad as previously, none | | 46 | 43 | 43 | 43 | 43 | 42 | | 42 | | | Riluteck Pyridostigmine Vit C COQ10 Low dose Aspirin | | stopped Lithium Orotate on the 14th March 2008 and started the same day on Lithium Carbonate | | | Stopping lithium after 3 months (2 on orotate, 1 on carbonate) because of rapid weakening of shoulder. Feels progression faster than before. | | | Although ALSFRS-R score is unchanged, quite a bit worse than 6 months ago | . | 66 | mkwong | | 37 | M | | May-03 | 45 | sALS/limb | No | | January 29, 2008 | | | Carbonate | | 150 mg 2x/day | 300 mg 2x/day | February 14, 2008 | 150mg+300mg day | February 28, 2008 | | | | | | | 0.28 | February 4, 2008 | 0.56 | February 20, 2008 | 0.49 | March 10, 2008 | 0.31 | March 17, 2008 | 0.6 | April 21, 2008 | 0.32 | July 22, 2008 | February 20, 2008 | more fatigue and weakness | | 45 | 21 | 19 | 15 | 21 | 19 | 18 | 18 | | | | | | | | | | | | . | 67 | Eileen | | 69 | M | | October-07 | 46 | sALS/limb | Yes | 50 mg 2x/day
| January 22, 2008 | | | Carbonate | | 150 mg 2x/day | 300 mg 2x/day | January 29, 2008 | 900 mg/day | February 7, 2008 | | | | | | | ? | February 6, 2008 | 0.54 | March 4, 2008 | 0.53 | May 29, 2008 | | | | | | | March 4, 2008 | SLIGHT HAND TREMORS | | 46 | 41 | | 34 | 30 | 26 | | | | | CoQ 10 300mg daily Creatine 4800mg daily Acetyl L Carnitine 450mg with Arginine 387mg daily Zoloft 200mg daily | | | | | bipap set at 12.4, ready to increase to 12.8. Using more frequently; all night, plus 4 hours during the afternoon -- 2 hours previously. | | | | . | 68 | Pasquale La Tosa | USA, Florida | 48 | M | | August-06 | 44 | sALS/bulbar | Yes | 50 mg 2x/day
| February 9, 2008 | | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | February 29, 2008 | 600 mg/day | March 18, 2008 | 750 mg/day | March 29, 2008 | 900 mg/day | April 15, 2008 | | | 0.3 | February 29, 2008 | 0.2 | March 18, 2008 | 0.3 | March 29, 2008 | 0.4 | May 30, 2008 | | | | | May 30, 2008 | none | | 44 | 32 | 34 | 34 | 32 | 31 | 34 | 29 | | | None | | | | | | | | | . | 69 | Jeannie | UK | 29 | F | A+ | July-01 | 46 | sALS/limb | No | | February 8, 2008 | June 6, 2008 | | Carbonate | | 250 mg 1x/day | 250 mg 2x/day | February 22, 2008 | 625 mg/day | March 12, 2008 | 750 mg/day | April 4, 2008 | 1000 mg/day | April 18, 2008 | 875 mg/day | May 2, 2008 | <0.1 | February 15, 2008 | 0.26 | March 10, 2008 | 0.25 | April 2, 2008 | 0.29 | April 16, 2008 | 0.6 | April 25, 2008 | 0.44 | May 9, 2008 | April 25, 2008 | NON SO FAR | | 46 | 27 | 28 | 28 | 28 | 28 | | 28 | | | QUININE, BACLOFEN | | | | | | Stopped taking lithium on June 6, 2008; progression seems to have been faster over past 4 months. | Went back to dose of 1000 mg/day on May 29, after blood reading of 0.33 on May 26. | | . | 70 | Dawinger | USA, MN | 55 | M | | April-07 | 47 | sALS/limb | No | | February 8, 2008 | | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | March 3, 2008 | 150 mg 4x/day
| March 8, 2008 | 150 mg 5x/day | April 8, 2008 | | | | | 0.2 | February 28, 2008 | 0.7 | March 13, 2008 | 0.4 | April 8, 2008 | 0.5 | June 11, 2008 | | | | | March 13, 2008 | mild headache, hand tremors, increased fasciculations | | 47 | 44 | 44 | 44 | 43 | | | 42 | | | .--milk thistle-b5-b12-b/complex-vit.d3-grape seed ext.-evening primrose oil-CoQ10 AIS MAX whey protein | | | | | Fascics are the same, increased shaking of hands, dry mouth in the morning | | | arms a little weaker but not much | . | 71 | hansdebree | Holland | 52 | M | | June-05 | 45 | sALS/limb | Yes | 50 mg 2x/day
| soon | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | 45 | | | | | | | | | | Vit. E, CoQ10, Vit. C, Vit. B, Sulfarlem | | | | | | | | | . | 72 | Matthew Fraser | New Zealand | 36 | M | | March-05 | 47 | sALS/limb | No | | February 13, 2008 | | | Carbonate | | 300 mg/day | 375 mg/day | February 25, 2008 | 250 mg 2x/day | ? | | | | | | | 0.2 | February 26, 2008 | 0.3 | March 12, 2008 | 0.3 | April 18, 2008 | 0.5 | May 15, 2008 | | | | | May 15, 2008 | none | | 47 | 28 | 26 | 25 | 25 | 25 | 25 | 23 | | | Chinese Herbs daily Garlic 300 mg daily Magnesium 100 mg daily Milk Thistle 300 mg daily New dawn honey 2 tbs. daily Selenium 200 mcg daily Soy Milk 500 daily Soy Protein 2 tbs. Soy lecithin 2 tbs. daily Vitamin B-6 5 mg daily Vitamin E 1000 mg daily Wheatgrass 1 tps. daily Juice, fresh veg and fruit daily | | | | | | | | | . | 73 | sh123 | | 39 | M | | April 2007 | 37 | sALS/limb | Yes | 50 mg 2x/day
| February 1, 2008 | | | Carbonate | | 300 mg/day | | | | | | | | | | | 0.4 | February 14, 2008 | | | | | | | | | | | February 14, 2008 | | | 37 | 23 | 22 | 22 | | | | | | | CoQ10 400 mg, lutimax, omega3 | | | | | | | | | . | 74 | Herdlurky | USA, Iowa | 28 | M | AB+ | October-03 | 48 | sALS/limb | No | | February 8, 2008 | | | Carbonate | | 150 mg 2x/day | 300 mg 2x/day | April 16, 2008 | | | | | | | | | 0.4 | February 22, 2008 | 0.2 | April 14, 2008 | 0.5 | May 2, 2008 | 0.5 | May 31, 2008 | | | | | February 22, 2008 | none | | 48 | 18 | 17 | 16 | 15 | 14 | | | | | Ambien, Zinc, Alpha Lipoic Acid, Silymarin, Vitamin C, Ambrotose | | | | | | | | | . | 75 | Steveh92562 | USA, California | 44 | M | | April-05 | 48 | sALS/limb | Yes | 50 mg 2x/day
| February 9, 2008 | March 15, 2008 | | Carbonate | | 150 mg 2x/day | | | | | | | | | | | >0.4 | February 18, 2008 | | | | | | | | | | | | strange taste in mouth and esophogus -- very bad | | 48 | 28 | 23 | | | | | 19 | | | | | Stopping lithium for two weeks starting 3/15 because of strong side effects and to recover from a bad flu infection | very sick with the flu all month | | | | | | . | 76 | Guppy | | 33 | F | | March-07 | 45 | sALS/limb | Yes | 50 mg 2x/day
| February 8, 2008 | | | Carbonate | Lithicarb | 250 mg 2x/day | 250 mg 3x/day | March 13, 2008 | 500 mg 2x/day | June 23, 2008 | | | | | | | <0 | January 6, 2008 | | | | | | | | | | | | none | feeling a little stronger in the legs | 45 | 39 | 41 | | | 39 | | | | | 1200mg CoQ10 daily | | | | | | | | | . | 77 | Pat Dwyer | USA, Seattle | 46 | M | | June-05 | 48 | sALS/limb | Yes | 50 mg 2x/day
| February 8, 2008 | April 24, 2008 | | Carbonate | | 150 mg 2x/day | 300 mg 2x/day | March 15, 2008 | | | | | | | | | 0.1 | March 3, 2008 | 0.4 | April 4, 2008 | | | | | | | | | April 4, 2008 | occasional headache (not sure if related to lithium) | | 48 | 35 | 36 | 32 | | | | | | | Vitamin B12, E, Magnesium, Potassium, CoQ10, Chinese herbs and Quinine for cramps | | | | Stopped lithium; CO2 levels up from 43 to 55 over two months. | | | | | . | 78 | Csaba42 | Hungary | 42 | M | | April-07 | 45 | don´t know | Yes | 50 mg 2x/day
| February 9, 2008 | | | Carbonate | | 125 mg 2x/day | 250 mg 2x/day | February 16, 2008 | 250 mg 3x/day | April 5, 2008 | | | | | | | 0.3 | February 22, 2008 | 0.4 | April 25, 2008 | | | | | | | | | April 25, 2008 | none | | 45 | 39 | 38 | | 37 | 37 | 37 | 36 | | | rilutek2*50mg/day creatine 5-7 g /day, vitamine complex,B1 1,5g/day, polyoxidonium cure 10*6mg, vitamine C 7 g/day,Calciummagnezium, amino acids(Bcca express+amino3600), tea-x, B vitamine komplex | | | | | | | | | . | 79 | Moacir | Brasil | 47 | M | | May-07 | 46 | sALS/limb | Yes | 50 mg 1x/day | January 20, 2008 | | | Carbonate | Carbolithium | 300 mg + 150 mg/day | 300 mg 2x/day | February 13, 2008 | 750 mg/day | February 29, 2008 | | | | | | | 0.12 | February 8, 2008 | 0.16 | February 22, 2008 | 0.28 | April 18, 2008 | | | | | | | | none | | 46 | 30 | 30 | 30 | 30 | 30 | 28 | 28 | | | rilutek 1x 50mg/day creatine 8g/day vitamine E 1200 ui/day vitamine C 1mg/day multivitamin Bacoflen 10 mg 2x/day tamoxifen 20mg 1x/day lithium 450 mg/day | physio 5x/week plus home exercise | | no change | | | | | |
|
| | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | . | 80 | Berci | Hungary | 51 | F | | June-07 | 46 | sALS/limb | Yes | 50 mg 2x/day
| January 27, 2008 | | | Carbonate | | 125 mg 2x/day | 250 mg 2x/day | February 3, 2008 | 375 mg/day | February 11, 2008 | 250 mg 2x/day | February 25, 2008 | | | | | 0,37 | February 8, 2008 | 0.38 | February 18, 2008 | 0.41 | February 28, 2008 | 0.42 | March 14, 2008 | | | | | February 28, 2008 | none | | 46 | 44 | 44 | 44 | | | | ] | | | Vitamin E, C, bkomplex | | | | | | | | | . | 81 | Treehugger39047 | USA | 65 | M | | October-04 | | sALS/limb | No | | not yet | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | VALIUM 2MG FOR SLEEP, VALERIAN FOR ANXIETY, SAM-e FOR DEPRESSION | | | | | | | | | . | 82 | kaihawaii | Germany | 36 | M | B+ | November-07 | 45 | sALS/limb | Yes | 50 mg 2x/day
| February 11, 2008 | July 18, 2008 | | Carbonate | Quilonum Retard | 225 mg 1x/day | 450 mg 1x/day | February 18, 2008 | 675 mg 1x/day | February 27, 2008 | 900 mg 1x/day | March 8, 2008 | | | | | 0.25 | February 27, 2008 | 0.37 | March 7, 2008 | 0.48 | March 19, 2008 | 0.51 | April 3, 2008 | 0.47 | April 18, 2008 | | | March 19, 2008 | they were gone (thirsty and very very bad, metallic taste in my mouth and also some kind of metallic smell in my nose), and dizziness after standing | | 45 | 45 | 45 | 45 | 45 | 45 | 43 | 42 | | | rilutek twice a day, Lyrica 75mg 3 times(Pregabalin - against muscle cramps), Magnesium 600mg / day, Vitamin E, 800mg day and Beer ;-) | Physiotherapy twice a week | sometimes burning eyes and more cramping of all muscles but especially in the legs (I don't now if its really a sideeffect or just progression of the disease) | weaker but not by full point | weaker but not by a full point. some days bad fascics, pain, and fatigue; other days not. | | | | | . | 83 | Sheronemus | USA | 48 | M | | March-06 | 43 | sALS/limb | Yes | 50 mg 2x/day | February 11, 2008 | | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | March 15, 2008 | | | | | | | | | 0.2 | February 25, 2008 | 0.3 | March 10, 2008 | 0.4 | March 24, 2008 | 0.3 | April 7, 2008 | 0.8 | May 1, 2008 | 0.4 | August 19, 2008 | March 24, 2008 | none | | 43 | 36 | 36 | 36 | 36 | 37 | 37 | 36 | | | baclofen 10mg 1x/day; Co-Q10 600mg 4x/day | | | | | | | | | . | 84 | groottde | Netherlands | 59 | M | | June-07 | 48 | sALS/limb | Yes | 50 mg 2x/day
| February 8, 2008 | | | Carbonate | Priadel | 150 mg 2x/day | 400 mg/day | February 14, 2008 | 600 mg/day | February 27, 2008 | 800 mg/day | March 12, 2008 | | | | | 0.2 | February 14, 2008 | 0.27 | February 27, 2008 | 0.39 | March 12, 2008 | 0.51 | March 27, 2008 | | | | | March 27, 2008 | none | | 48 | 45 | 43 | 44 | 42 | | 33 | | | | I also visit a Nature scientist and I have sometimes help of an personal coache. | | The progress of my desease is very slowly.The functions of my hand and fingers is not well (tighten buttons or so) | | Arms and hands still getting weaker | hands and arms still getting weaker | | no side effects but hands and arms and legs still getting weaker | | . | 85 | Dave S. | USA, Michigan | 35 | M | | March-07 | 48 | sALS/limb | Yes | 50 mg 2x/day | January 15, 2008 | March 26, 2008 | | Carbonate | | 300 mg 1x/day | 450 mg 1x/day | January 15, 2008 | 300 mg 2x/day | February 1, 2008 | 900 mg/day | March 1, 2008 | | | | | 0,3 | January 15, 2008 | 0,3 | February 1, 2008 | 0.3 | February 21, 2008 | 0.4 | March 25, 2008 | | | | | March 25, 2008 | Increased fasc., occasional upset stomach at start up, mild headache at start up. Restless sleep, more fasc., weaker? | | 48 | 42 | 40 | 38 | 38 | | | | | | Started worthlesstek about two weeks after lithium, multi vit,coq10,omega 3,glyconutrients | | still have more fasc and more weakness and occasional hand tremor | | | too many side effects, primarily increased weakness everywhere, almost feels as though progression was sped up due to lithium......taking a break for now.....may start up again | | | | . | 86 | DTA | USA | 58 | M | | October-92 | 48 | sALS/limb | No | | January 27, 2008 | April 1, 2008 | | Carbonate | | 375 mg 1x/day | 300 mg/day | March 13, 2008 | | | | | | | | | 0.3 | February 2, 2008 | 0.4 | February 9, 2008 | 0.4 | March 1, 2008 | | | | | | | February 9, 2008 | Upon starting, symptoms (fasciculation's, weakness, etc) accelerated, but, returned to pre-lithium levels after 2 weeks. nausea and increased urination. | | 48 | 9 | 9 | 8 | | | | | | | | | | | | | | | | . | 87 | ZenArcher | USA | 39 | M | | February-07 | 47 | sALS/limb | Yes | 50 mg 1x/day | February 7, 2008 | April 21, 2008 | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | February 13, 2008 | 150 mg 4x/day | March 14, 2008 | | | | | | | <0.2 | February 12, 2008 | 0.4 | February 25, 2008 | 0.3 | March 10, 2008 | 0.5 | March 24, 2008 | 0.4 | April 7, 2008 | 0.4 | April 18, 2008 | February 25, 2008 | Occasional slurred speech | | 47 | 45 | 45 | 44 | 41 | | | 42 | | | Coenzyme Q-10 (400 mg), N-Acetyl Cysteine (600 mg), Vitamin E (400 mg), Vitamin D (400 mg), Vitamin C (2000 mg), Blueberry Extract (2000 mg), Silymarin Milk Thistle (1200 mg), Green Tea Extract (630 mg), Vitamin B Complex (150 mg), Ginkgo Biloba (240 mg), Magnesium Oxide (250 mg), Vipocetine (20 mg), Flaxseed Oil (4000 mg), Melatonin (5 mg), Grape Seed Extract (400 mg), Acetyl L-Carnitine (1000 mg), Alpha Lipoic Acid (600 mg), Creatine (4500 mg) | | | | | stopped lithium on April 21 because of a sudden change in leg strength and speech. No recovery of function as of one month after stopping. | | | | . | 88 | gjones | USA | 56 | M | | December-05 | 37 | sALS/limb | No | | February 13, 2008 | March 23, 2008 | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | February 27, 2008 | 150 mg 5x/day | March 7, 2008 | | | | | | | 0.2 | February 18, 2008 | 0.3 | February 25, 2008 | 0.25 | March 4, 2008 | | | | | | | | constipation and headaches. Side effects so bad that lithium discontinued as of March 23, 2008 | | 37 | 18 | 16 | | | | | 10 | | | celebrex, prozac, baclofen, coQ10, alpha lipoic acid | | Lithium discontinued on March 23, 2008. Severe constipation and headache and faster progression. | | | | | | | . | 89 | Lorie | USA, Alabama | 46 | F | | March-05 | | sALS/limb | | | soon | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | . | 90 | Joe | USA | 38 | M | | October-07 | 47 | sALS/limb | No | | February 13, 2008 | | | Carbonate | | 150 mg 2x/day | 300 mg 2x/day | March 18, 2008 | 450 mg 2x/day | April 23, 2008 | 450 mg 3x/day | July 8, 2008 | | | | | 0.007 | March 18, 2008 | 0.19 | April 23, 2008 | 0.38 | July 8, 2008 | | | | | | | | none | | 47 | 40 | 40 | 40 | 40 | 38 | 38 | 38 | | | | | | | | | | | | . | 91 | J. Macnab | Great Britain | 51 | M | | November-07 | 43 | sALS/limb | Yes | 50 mg 2x/day | February 9, 2008 | | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | February 23, 2008 | 250 mg/day | May 1, 2008 | | | | | | | 0.19 | March 28, 2008 | | | | | | | | | | | | none | | 43 | 38 | 37 | 33 | 29 | 26 | 22 | 17 | | | Co-enzyme Q-10, Grape seed extract, Vitamin B, NAC | | | | | | | | | . | 92 | Dana P | USA | 52 | F | O+ | March-06 | 46 | sALS/limb | No | | February 14, 2008 | April 20, 2008 | | Carbonate | | 150 mg 2x/day | | | | | | | | | | | 0.3 | February 21, 2008 | | | | | | | | | | | | increased fasciculations, fatigue, slight headache | no cramps or spasms | 46 | 28 | 28 | | | | | 10 | | | | | | | Stopped lithium on April 20, 2008. PEG operation on April 22, went on ventilator on May 8. | | | | | . | 93 | jeremy b. | USA | 58 | M | A+ | May-07 | 47 | ALS/bulbar | No | | February 14, 2008 | July 18, 2008 | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | February 20, 2008 | 300 mg 2x/day | February 27, 2008 | 300 mg 3x/day | April 9, 2008 | 300 mg 2x/day | April 19, 2008 | 150 mg 2x/day | May 31, 2008 | 0 | February 20, 2008 | 0.3 | February 27, 2008 | 0.3 | March 5, 2008 | 0.5 | April 15, 2008 | 0.3 | May 5, 2008 | 0.2 | June 21, 2008 | April 15, 2008 | upset stomach? Fatigue | wife thinks handwriting is easier to read. Third month: Emotional lability gone. | 47 | 30 | 28 | 24 | 24 | 21 | 19 | | | | 1.5 cans isosource and 25 mg elanil at night | | Very bad side effects at 900 mg/day: upset stomach, feeling terrible. Dropped back to 600 mg/day | | sleeping better at night. Still not feeling as well as before going to 900 mg/day (currently at 600 mg/day) | Often has an upset stomach, thought process slower. | lowered lithium dose because of almost daily stomach upset | Stopped on July 18: The lithium hasn't slowed progression and stomach aches are continuing. Also stopping Prevagen. | | . | 94 | Erika | Hungary | 56 | F | | February-08 | 39 | sALS/limb | Yes | | March 20, 2008 | July 31, 2008 | | carbonate | Lithicarb | ? | 250 mg 2x/day | June 30, 2008 | | | | | | | | | 0.27 | April 20, 2008 | 0.34 | June 16, 2008 | | | | | | | | | | weakness | | 39 | | 36 | | 32 | 30 | 28 | 27 | | | baclofen | | | | | | | | | . | 95 | CMA | USA | 47 | F | | February-07 | | ALS/bulbar | No | | February 29, 2008 | April 19, 2008 | | | | 150 mg 2x/day | 600 mg/day | March 17, 2008 | 900 mg/day | ? | 750 mg/day | April 4, 2008 | | | | | <0.2 | March 12, 2008 | 0.3 | April 4, 2008 | | | | | | | | | | I've been taking Lithium since a week now and just since yesterday I started feeling weakness, and fatique | | | 34 | 34 | | | | | | | | 1 Mg Estrodial, 0.88mg Levothyroxine, 10 Mg Paxil, 10 Mg Zyrtec, & various Vitamins | | Could not tolerate 900 mg/day dose -- felt like a zombie -- wobbly walk, felt out of it | | | | | | | . | 96 | grob44 | USA-FL | 63 | M | | November-05 | 44 | sALS/limb | Yes | 50 mg 2x/day
| February 16, 2008 | May 10, 2008 | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | March 30, 2008 | 150 mg 2x/day | May 4, 2008 | | | | | | | 0.3 | February 15, 2008 | 0.4 | February 26, 2008 | 0.2 | March 18, 2008 | 0.3 | April 4, 2008 | 0.3 | April 20, 2008 | | | February 26, 2008 | none | | 44 | 28 | 26 | 19 | | | | | | | | blood pressure, diuretic, muscle relaxer, sleeping pill | | | | Stopped lithium on May 10, 2008 because progression did not slow on lithium | | | | . | 97 | Donna B. | USA, Colorado | 51 | F | O+ | May-05 | 47 | sALS/limb | No | | February 15, 2008 | April 23, 2008* | June 18, 2008 | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | March 18, 2008 | 150 mg 4x/day
| March 27, 2008 | 150 mg/day | June 18, 2008 | | | | | 0.3 | February 21, 2008 | 0.3 | February 28, 2008 | 0.3 | March 6, 2008 | 0.3 | March 13, 2008 | 0.38 | March 27, 2008 | 0.47 | April 3, 2008 | April 3, 2008 | headache every day for first week, then stopped. Increased saliva, twitching, & clonus; stiff & hard to walk | | 47 | 30 | 30 | 30 | | | | 28 | | | celebrex 200mg 2xday; aciphex 30mg; zanaflex 6mg | | started rilutek on Feb. 15; stopped rilutek and celebrex on Feb. 29 due to elevated liver enzymes. | | stopped lithium because felt weaker, more fatigue, worse in general | | Stopped lithium on Jully 6, 2008, just 2 wks after restarting; very stiff and weak, esp. hips and shoulders. Lithium not working for me. | | | . | 98 | ctfla | USA | 49 | M | | January-06 | 46 | sALS/limb | Yes | 50 mg 2x/day
| February 15, 2008 | August 15, 2008 | | Carbonate | | 300 mg/day | 600 mg/day | February 15, 2008 | 750 mg/day | April 23, 2008 | | | | | | | 0.2 | February 8, 2008 | 0.3 | April 13, 2008 | 0.5 | | 0.56 | June 20, 2008 | | | | | ~May 2008 | none | | 46 | 19 | 19 | 19 | 18 | 18 | 18 | 18 | | | baclofen,floxetine,protonix,claratin | | | | | decreased pseudo-bulbar effect -- less laughing and crying innapropriately | | | | . | 99 | RENNIE | SOUTH AFRICA | 51 | M | | May-01 | 45 | sALS/limb | No | | January 14, 2008 | August 15, 2008 | | CAMCOLIT | | 400 mg/day | 600 mg/day | April 19, 2008 | 750 mg/day | ? | 600 mg/day
| May 22, 2008 | 400 mg/day | May 31, 2008 | | | 0.4 | February 19, 2008 | 0.3 | April 18, 2008 | 0.5 | May 13, 2008 | 0.7 | May 20, 2008 | 0.3 | August 2, 2008 | | | February 19, 2008 | none | | 45 | 21 | 22 | 22 | 21 | 21 | 24 | 21 | | | 600MG TEGRETOL, 400MG NEURONTIN, 20MG LORIEN, 10MG FOLATE, 80MG DIOVAN (valsartan), 200MG N-ACETYL CYSTEINE, 20MG VITAMIN B COMPLEX H | | | | | | | | planning to experimentally stop on Aug. 15 |
|
| | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | . | 100 | ireckon | USA | 46 | M | | January-06 | 47 | sALS/bulbar | Yes | 50 mg 2x/day | February 14, 2008 | | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | February 26, 2008 | 150 mg 4x/day | March 7, 2008 | | | | | | | 0.17 | February 21, 2008 | 0.21 | February 28, 2008 | 0.26 | March 6, 2008 | 0.4 | March 13, 2008 | | | | | March 13, 2008 | saltwater taste in mouth. More energy at 300 and 450 mg but less energy at 600 mg. Initially spasms & fascics but cleared up. | | 47 | 43 | 43 | 41 | 41 | 41 | 41 | 40 | | | get b12 shots, co10, multivatims | | | | strong fasciculations on and off | side effects not noticeable anymor | | | stopped rilutek on 8/16 because of diziness. | . | 101 | Argia | Spain | 30 | M | | June-07 | 47 | sALS/limb | Yes | | February 19, 2008 | | | Carbonate | | 150 mg 2x/day | 200 mg 2x/day | March 4, 2008 | 150 mg 3x/day | March 18, 2008 | 600 mg/day | April 11, 2008 | | | | | 0.23 | February 28, 2008 | 0.28 | March 13, 2008 | 0.33 | April 10, 2008 | | | | | | | | Increased fasciculation, Urgency to pee | | 47 | 43 | 43 | 41 | | | | 33 | | | | | | | | | | | | . | 102 | BKK | Canada | 54 | M | | November-06 | 45 | sALS/bulbar | No | | March 7, 2008 | March 29, 2008 | | Carbonate | | 300 mg/day | 450 mg/day | March 27, 2008 | | | | | | | | | 0.2 | March 25, 2008 | | | | | | | | | | | | none | | 45 | 22 | | | | | | | | | | | We are sad to report that BKK passed away on unexpectedly on March 29, 2008
| | | | | | | . | 103 | Gene S | | 59 | M | | September-06 | 46 | sALS/limb | Yes | 50 mg 2x/day | February 15, 2008 | July 28, 2008 | | Carbonate | | 150 mg 2x/day | 150 4x/day | June 23, 2008 | | | | | | | | | >0.5 | February 25, 2008 | 0.4 | March 25, 2008 | 2.7 | May 2, 2008 | 1.7 | May 7, 2008 | 0.4 | June 12, 2008 | 0.3 | June 23, 2008 | March 25, 2008? | nearly reached lithium toxicity when food, water intake curtailed by swallowing difficulties | | 46 | 21 | 18 | 13 | 11 | 11 | 11 | | | | BACLOFEN, FLOMAX, SERTRALINE, WARFARIN, VITAMIN C, VITAMIN E, VITAMIN B COMPLEX, CENTRUM SILVER, BETA CAROTENE, WALFINATE, ALBUTEROL | | We are sad to report that Gene passed away on Sept 1, 2008 | | lithium was stopped because blood level was measured at 2.7 on May 2. Measured at 1.7 on May 3 | lithium was stopped from May 2-10 bec. of a toxicity episode (Gene was not eating or drinking prior to a feeding tube operation) | Feeding tube inserted this month. Lithium stopped for surgery; now back on 450 mg/day, blood level of 0.4 on June 12. | | | . | 104 | crokay | USA | 77 | M | | February-02 | 42 | sALS/limb | Yes | 50 mg 2x/day
| February 14, 2008 | | | Carbonate | | 300 mg/day | | | | | | | | | | | 0.6 | March 11, 2008 | 0.4 | April 2, 2008 | 0.7 | April 30, 2008 | | | | | | | March 11, 2008 | none | feel better | 42 | 23 | 20 | 22 | 23 | 20 | 22 | | | | provigil 100mg qd.,celebrex 200mg qd., co-q10 600mg qd | | | | | | | | | . | 105 | SHANO | AUSTRALIA | 50 | M | | August-07 | 46 | ALS/bulbar | Yes | 50 mg 2x/day | February 14, 2008 | March 3, 2008 | | Carbonate | | 250 mg 2x/day | | | | | | | | | | | 0.6 | February 25, 2008 | | | | | | | | | | | February 25, 2008 | I HAVE HAD AN UPPER BODY HEAT RASH FOR 6 MONTHS, THAT SUDDENLY GOT WORSE AT ABOUT THE TIME I STARTED | | 46 | 32 | 35 | | | | | | | | Baclofen 10mg Creatine 20mg Omega 3 4000 Zinc 125 B Complex 1 Garlic 900 Vitamin C 2000 Flaxseed 4000 Burdock Root 1400 Silymarin/ St Marys Thistle 700 Grape Seed 100 Ginger 1000 Water 3.5lt | | Stopped 3/3/08 due to severe rash that started immediately. Started Baclofen same day as Lith and now think it is the Bac that is causing rash. Have stopped Bac and will restart Lith if rash subsides | | | | | | | . | 106 | Wolfbane | USA | 48 | M | | November 2007 | 47 | sALS/limb | Yes | 100 mg/day | February 21, 2008 | April 1, 2008 | April 24, 2008 | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | March 19, 2008 | 150 mg 2x/day | May 1, 2008 | 150 mg 3x/day | May 22, 2008 | 600 mg/day | June 2, 2008 | 900 mg/day | August 21, 2008 | <0.2 | March 19, 2008 | <0.2 | July 14, 2008 | 0.4 | August 25, 2008 | | | | | | | August 25, 2008 | No side effects as far as | | 47 | 47 | 47 | 47 | 47 | 47 | 47 | 47 | | | vitamins, omega 3, Vitamin D3 | | | | Went off of lithium for several weeks for liver check. Severe cramps in leg when went off; cramps went away when started again. | I have noticed that my cramping has reduced significantly | | slight visual effects. Some difficulty focusing after taking dose, usually gone in 45 minutes. | suffered pericarditis; lithium dose temporarily down to 450 mg/day | . | 107 | RuleBoy | USA | 54 | M | | May-05 | 48 | sALS/limb | Yes | 50 mg 2x/day | February 10, 2008 | August 9, 2008 | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | February 20, 2008 | 300 mg 2x/day | February 29, 2008 | | | | | | | <0.1 | February 18, 2008 | 0.2 | February 28, 2008 | 0.4 | March 11, 2008 | 0.4 | March 27, 2008 | 0.4 | April 25, 2008 | 0.5 | July 14, 2008 | March 11, 2008 | none | | 48 | 33 | 33 | 33 | 33 | 33 | 31 | 30 | | | cymbalta | | | | | might be a bit weaker although FRS is unchanged. Slow progressor. | ALSFRS-R score same but subtle deterioration | | stopped lithium just short of the six month point. A little less clonus since stopping. | . | 108 | Pajo13 | HUNGARY | 61 | M | | March-06 | 45 | sALS/bulbar | Yes | 50 mg 2x/day
| January 30, 2008 | | | Carbonate | | 150 mg 2x/day | 150 3x/day | February 13, 2008 | 375 mg/day | February 22, 2008 | 150 mg 2x/day | March 28, 2008 | | | | | 0.36 | | 0.33 | February 5, 2008 | 0.67 | February 19, 2008 | 0.58 | March 21, 2008 | | | | | | none | | 45 | 29 | 29 | 24 | 22 | | | | | | antidepressant | | | | | | | | | . | 109 | Brian J. | USA, CA | 57 | M | | July-07 | 43 | sALS/limb | No | | February 15, 2008 | | | Carbonate | | 300 mg 2x/day | | | | | | | | | | | 0.5 | February 19, 2008 | 0.5 | February 27, 2008 | 0.4 | March 5, 2008 | 0.5 | March 12, 2008 | 0.5 | April 8, 2008 | 0.6 | June 9, 2008 | February 19, 2008 | mild upset stomach | | 43 | 31 | 31 | 30 | 29 | 27 | | | | | | | | | | | | | | . | 110 | RWhitlock | NC, USA | 58 | M | | November-78 | 48 | sALS/limb | No | | January 29, 2008 | April 29, 2008 | | Orotate | | 720 mgs | | | | | | | | | | | | | | | | | | | | | | | | occasionally slight headache and nausea | | 48 | 23 | | | | | | 22 | | | Fish oil X6 CoQ10 100mgs X4 Astragalus X3 Grape seed extract X3 Milk Thistle Extract 600mg X3 Green Tea extract X3 Tumeric X3 Lecithin X1 Dolomite X9 Coral Calcium X4 Burdock Root X3 Vit E 400 iu X6 Vit C 500 mgs X1 Vit B Complex 50mgs ½ X2 Cell Forte (Inositol) X3 Evening Primerose oil X3 Vit D X1 Vit B15 X1 Teavigo X4 150mg egcg Acetyl L-Carnitine HCl 500mg X1 N-Acetyl Cysteine 600mg X2 After meals under tongue B12 methylcobalamin 1000mcg sublingual x2 | | | | | Stopped lithium on April 29 because not effective (after some improvements over the first two weeks). | | | | . | 111 | DaddyO | USA, Georgia | 47 | M | | September-06 | 44 | ALS/bulbar | No | | February 22, 2008 | | | Carbonate | | 150 mg 2x/day | 300 mg 2x/day | April 24, 2008 | 900 mg/day | May 20, 2008 | 1200 mg/day | June 18, 2008 | 600 mg/day | July 25, 2008 | | | 0.2 | February 29, 2008 | 0.1 | March 10, 2008 | 0.2 | March 17, 2008 | 0 | April 24, 2008 | 0.23 | May 4, 2008 | 0.5 | June 16, 2008 | June 16, 2008 | dry mouth, increased fasciculations | Much less cramps in neck (yawning) - No lump in throat - Voice clearer - Able to type with left hand - Able to write better - decreased saliva/drooling and increased appetite | 44 | 34 | 35 | 35 | 34 | 34 | 35 | 34 | | | Ambien 10mg, Ritalin 10mg......supplements: B complex, vitaman E, multil-vitaman | | | | | left hand can type fast but it hurts | | still have dry mouth but fasciculations have decreased. | | . | 112 | Boiler Fan | USA | 67 | M | | July-07 | 44 | ALS/bulbar | Yes | 50 mg 2x/day
| February 18, 2008 | | | Carbonate | | 150 mg 2x/day | | | | | | | | | | | | | | | | | | | | | | | | none | | 44 | 41 | | | | | | | | | other vitamins and minerals | | | | | | | | | . | 113 | togos | USA, California | 49 | M | | December-05 | 47 | sALS/limb | Yes | 50 mg 2x/day | February 22, 2008 | | | Carbonate | | 150 mg 2x/day | 300 mg 2x/day | April 1, 2008 | 300 3x/day | May 1, 2008 | 300 2x/day | May 21, 2008 | | | | | 0.2 | March 11, 2008 | ? | March 25, 2008 | 0.2 | April 1, 2008 | 0.3 | May 1, 2008 | 0.4 | May 21, 2008 | | | May 21, 2008 | none | | 47 | 43 | | | 40 | | | 40 | | | multivitamin, calcium supplement | | | | | legs noticeably weaker over last 45 days. Still walking but with a lot of effort. | | | | . | 114 | Bosque2805 | USA | 64 | F | | March-05 | 41 | sALS/limb | Yes | 50 mg 2x/day
| February 15, 2008 | April 20, 2008 | | Carbonate | | 150 mg 2x/day | | | | | | | | | | | | | | | | | | | | | | | | none | | 41 | 36 | | | | | | 35 | | | Multivitamin, B12, ALA | | | | lithium stopped because weakness increased rapidly, particularly in arms and breathing | | | | | . | 115 | SmoothS | USA, Georgia | 39 | M | A- | October-06 | 45 | sALS/limb | No | | March 4, 2008 | | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | March 19, 2008 | 300 mg 2x/day | April 8, 2008 | 750 mg/day | April 30, 2008 | 300 mg 2x/day | May 7, 2008 | | | 0.3 | March 10, 2008 | 0.2 | March 18, 2008 | 0.3 | April 8, 2008 | 0.4 | April 15, 2008 | 0.6 | May 6, 2008 | | | | none | | 45 | 25 | 22 | 21 | | | | | | | none | | | | no side effects but increased clonus noticeable. Possible slowing of sx. | | | | | . | 116 | Trixie | Canada, AB | 48 | F | | July 2006 | 41 | sALS/bulbar | No | | February 23, 2008 | | | Carbonate | LiCarb | 300 mg/day | | | | | | | | | | | | | | | | | | | | | | | | | | 41 | 18 | | | | | | | | | CoQ10, Acupuncture | | | | | | | | | . | 117 | Maureen e | USA | 62 | F | | July-05 | 36 | sALS/limb | Yes | 50 mg 2x/day | February 6, 2008 | | | Carbonate | | 150 mg 2x/day | 300 mg 2x/day | March 10, 2008 | 450 mg/day | April 7, 2008 | 600 mg/day
| April 10, 2008 | 450 mg/day | April ? | 600 mg/day | May 15, 2008 | 0.1 | February 20, 2008 | 0.2 | March 26, 2008 | 0.2 | April 3, 2008 | 0.2 | April 22, 2008 | 0.12 | April 30, 2008 | 0.4 | May 18, 2008 | May 18, 2008 | Soft bowl movements -- starting to feel less tired.. also have diarrea | | 36 | 19 | 16 | 18 | 21 | | 17 | | | | coq10, effexor xr, lorezepam, mucinex, multi-vitamin, naltrexone, norvasc, qualaquin, senna, zetia, ursodiol, provigil | | | | feeling fatiqued | went from 450 mg to 600 mg on March 10; felt fatigued; went back to 450 mg, then went back to 600 on April 10 | | horrible tiredness, considering stopping lithium. Current 600 mg/day, 0.3 blood level on 6/1 | I am pretty sad! - Humberto | . | 118 | Penn State Mike | | 34 | M | | November-07 | 44 | ALS/bulbar | Yes | 50 mg 2x/day
| February 21, 2008 | | | Carbonate | | 150 mg 2x/day | | | | | | | | | | | | | | | | | | | | | | | | none | | 44 | 44 | | | | | | | | | VITAMIN C (3000mg daily), VITAMIN E (400 IU daily), BETACAROTENE (25,000 IU daily), CoEnzyme Q10 (300mg daily) | | | | | | | | | . | 119 | Stu | CANADA | 57 | M | | March-07 | 44 | sALS/limb | Yes | 50 mg 2x/day | February 25, 2008 | May 25, 2008 | | Carbonate | Carbolith | 150 mg 2x/day | 150 mg 3x/day | March 6, 2008 | | | | | | | | | 0.2 | February 29, 2008 | 0.4 | March 14, 2008 | 0.5 | April 4, 2008 | 0.5 | May 6, 2008 | | | | | March 14, 2008 | headache and nausea for first three days (gone), abdominal cramps, increased urination - legs and trunk a little weaker. Less steady walking and on the stairs | eye lid fasciculations stopped, tears no longer burn eyes, feet are no longer cold, and legs are slightly stronger | 44 | 32 | 31 | 28 | 26 | | | 24 | | | Effexor XR 37.5mg, COQ10- 100mg, Creatine - 5 grams, Selenium - 50mg, Vitamin E - 1200U, Vitamin C - 1000mg, Vitamin A - 12,500U, Cod Liver Oil - 10minims Naproxen 2x 500mg | | | | | | Lithium stopped on May 25 due to side effects and accelerated progression of ALS symptoms. | | |
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| | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | . | 120 | Patrick | | 66 | M | | August 2006 | 47 | sALS/bulbar | Yes | | January 23, 2008 | ~April 13, 2008 | | camoclite tab | | 250 mg 2x/day | 250 mg 1x/day | February 5, 2008 | 181.5 mg/day | February 25, 2008 | | | | | | | 0.8 | January 29, 2008 | 0.4 | February 5, 2008 | 0.55 | February 25, 2008 | | | | | | | February 5, 2008 | THIRSTY ALL THE TIME, A SMALL RASH THAT LASTED ABOUT TWO WEEKS | A LITTLE EASIER TO SWALLOW SIPS OF WATER | 47 | 9 | 9 | | | | | | | | | | | | | stopped lithium because hospitalized with high liver enzymes. May restart later. | We are sorry to report to that Patrick passed away on May 19. | | | . | 121 | Gasman | Wales, UK | 49 | M | | December-05 | 44 | sALS/limb | Yes | 50 mg 2x/day | February 17, 2008 | | | Carbonate | Lithosun | 150 mg 2x/day | 150 mg 3x/day | March 6, 2008 | 300 mg 2x/day | March 20, 2008 | 750 mg/day | April 7, 2008 | 900 mg/day | April 29, 2008 | | | 0.11 | February 22, 2008 | 0.15 | February 29, 2008 | 0.22 | March 11, 2008 | 0.27 | March 18, 2008 | 0.39 | April 15, 2008 | 0.5 | July 18, 2008 | May 8, 2008 | loose but regular stools, increased fasciculations? | | 44 | 22 | 22 | 22 | 22 | 22 | 22 | 21 | | | Ca, Mg, Zn, grape seed extract, ginseng, Vits C and E, CoQ10, ginger, tumeric, rosemary, ccreatine, colustrum, alpha lipoic acid, reservatrol | | | | Increased fascics in first month settled down. Loose but regular stools. Increased emotional lability? | Increased cramps and clonus. Fasciculations reduced to pre-lithium levels. | increased clonus and cramps | | | . | 122 | Kenny A | USA | 36 | M | | February-03 | 47 | sALS/limb | Yes | 50 mg 2x/day
| February 25, 2008 | | | Carbonate | | 150 mg 2x/day | 450 mg/day | February 25, 2008 | | | | | | | | | 0.3 | March 7, 2008 | 0.3 | March 14, 2008 | 0.3 | March 21, 2008 | 0.6 | April 9, 2008 | | | | | April 9, 2008 | The only side-effects I had were headaches, nausea and diarhea for the first 2 weeks. No problems since | | 47 | 17 | 18 | | | | | | | | I take zyrtec 10mg daily amitriptyline 100mg daily lexapro 10mg daily baclofen 10mg daily zanaflex 16mg daily nexium 20mg daily marinol 7.5mg daily COQ10 200mg daily vitamin E not sure mg vitamin C 1200mg daily grape seed extract 50mg daily vitamin B12 1000mg daily | | | | | | | | | . | 123 | gamboachuck | USA | 70 | M | | November-04 | 29 | sALS/limb | Yes | 50 mg 2x/day | February 26, 2008 | | | Carbonate | | 150 mg 2x/day | 600 mg/day | May 31, 2008 | | | | | | | | | 0.17 | February 29, 2008 | 0.19 | March 7, 2008 | 0.2 | March 14, 2008 | 0.28 | May 19, 2008 | 0.49 | June 10, 2008 | 0.47 | September 2, 2008 | June 10, 2008 | not experienced any noticeable effects, positive or negative | | 29 | 20 | 20 | 20 | 23 | 19 | 22 | 21 | | | | | | | increase in salivation and yawning | | June 10: Reached 0.49 mmol/l and experienced increased fasciculations in legs and arms. | increased fascics in arms and thighs. Dreams extend into consciousness for 10 to 15 minutes after waking, | Blood level 0.6; increased sleepiness according to wife. | . | 124 | nedv | CANADA | 53 | M | | October-05 | 45 | sALS/limb | Yes | 50 mg 2x/day
| February 13, 2008 | | | Carbonate | | 150 mg 2x/day | 450 mg/day | May 17, 2008 | | | | | | | | | 0.2 | May 17, 2008 | 0.4 | August 20. 2008 ? | | | | | | | | | August 20, 2008? | occasional nausea/hot flushes | | 45 | 24 | 24 | 25 | 23 | 23 | 20 | 22 | | | low dose naltrexone. Amytripteline. Folic acid. Medical marijuana | | | | | | dry, flaky skin on face | | | . | 125 | Leedx | USA/California | 61 | M | A+ | April 2007 | 40 | sALS/limb | No | | February 27, 2008 | | | Carbonate | Roxane Labs | 150 mg 2x/day | 150 mg 3x/day | March 14, 2008 | | | | | | | | | 0 | March 4, 2008 | 0 | March 11, 2008 | 0.3 | March 18, 2008 | | | | | | | | HEADACHE, FATIGUE | | 40 | 27 | | | | | | | 15 | 9/16/2008 | multi-vitamins, vitamin C | | | | | | | | | . | 126 | Removed intentionally | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | . | 127 | reviva | USA | 59 | M | | June-04 | 46 | sALS/limb | Yes | 50 mg 2x/day | February 26, 2008 | | | Carbonate | | 150 mg 2x/day | 450 mg/day | | | | | | | | | | 0.6 | March 26, 2008 | | | | | | | | | | | March 26, 2008 | none | | 46 | 31 | 30 | | | | | | | | cytoxan,minocin,azithromycin,ivermectin,alpha lipoic acid, acetyl=L-carnitine,omacor | | | | | | | | | . | 128 | Shannon | USA | 62 | M | | December-04 | 46 | sALS/limb | Yes | 50 mg 2x/day
| February 28, 2008 | April 23, 2008 | | Carbonate | | 150 mg 1x/day | 150 mg 2x/day | February 28, 2008 | 150 mg 3x/day | March 12, 2008 | | | | | | | 0.2 | March 12, 2008 | 0.4 | April 2, 2008 | 0.4 | July 3, 2008 | | | | | | | April 2, 2008 | none | | 46 | 33 | 33 | 34 | | | | | | | Nexium, Sertraline HCL, Alprazolam ER | | | | lithium stopped due to increased depression and trembling of hands | | | | | . | 129 | cheryilyn | USA | 50 | F | | September-06 | 42 | sALS/bulbar | Yes | 50 mg 2x/day | February 29, 2008 | May 15, 2008 | | Carbonate | | 150 mg 2x/day | | | | | | | | | | | 0.4 | March 7, 2008 | | | | | | | | | | | March 7, 2008 | n/a | | 42 | 11 | | | | | | | | | zoloft 100mg 1x baclofen 10mg 3x glyburide 5mg 2x metformin 500mg 2x lisinapril 5 mg 1x glycopyrrol 1 mg 2x gemfibrozil 300mg 2x omeprazole 20 mg 2x furosemide 20 mg 1x docusate sodium 100mg 2x aspirin ..81mg 1x vit e 400mg 1x vit c 1000mg 1x fish oil 1000mg 1x tylenol 1000mg 2x | | | | | Stopped lithium on May 15 after being admitted to the hospital for pneumonia. Didn't go back on bec. didn't want to deal with headaches again. Also suffered severe headaches when lithium was stopped. | | | | . | 130 | Roy J. Gromlich | USA | 65 | M | | February-06 | 40 | sALS/limb | Yes | 50 mg 2x/day
| February 16, 2008 | | | Carbonate | | 150 mg 2x/day | 450 mg/day | March 13, 2008 | | | | | | | | | 0.4 | February 28, 2008 | 0.3 | March 13, 2008 | 0.4 | March 26, 2008 | 0.5 | April 9, 2008 | 0.5 | May 14, 2008 | 0.7 | June 25, 2008 | February 28, 2008 | Possibly increase urination - nothing else so far - WEAKNESS, LETHARGY, POOR CONCENTRATION, SWOLLOWING DIFFICULTIES | strength of legs, lower back and sides Easier time sitting & standing Easier time eating, chewing & swallowing - less coughing and choking | 40 | 30 | 31 | 28 | 28 | 28 | | | | | Q-10 400 mg/day and Vit E - 400 IU/day | | Neck strength is better - easier lifting head and holding. Chewing and swallowing is nearly normal for 1st time in 6 months or more. Fingers are better - easier to type this week than last week or the week before | | Not feeling too good - weakness, tiredness, difficulty chewing and swallowing food. Tremor in right hand at times -- fasics in both legs | tired, aching, out of focus. Difficulty standing from bed and chair. Severe constipation. | | | | . | 131 | Bunky | USA | 62 | F | | January-05 | 46 | sALS/limb | Yes | 50 mg 2x/day | February 29, 2008 | July 30, 2008 | August 15, 2008 | Carbonate | Eskalith | 150 mg 2x/day | 450 mg/day | March 22, 2008 | 300 mg/day | 450 mg/day | May 30, 2008 | 150 mg/day | August 15, 2008 | 450 mg/day | August 30, 2008 | | 0.2 | March 6, 2008 | 0.3 | March 13, 2008 | 0.2 | March 20, 2008 | 0.3 | March 27, 2008 | 0.4 | April 3, 2008 | 0.4 | October 2, 2008 | April 3, 2008 | Increased urinations, increased muscle weakness, and fatigue | | 46 | 40 | 40 | 40 | 40 | 40 | 40 | 40 | | | CoQ10 1200 mg/day Lorazapam 0.5 mg 2/day | | hand tremors lessened and not feeling as weak after lowering dose from 450 to 300 mg/day on May 10. | | extreme fatigue and constant urination less, but experiencing hand tremors and weakness in both hands and arms | Went down dosage, and then back up to 450 mg/day for two weeks. Side effects now much reduced, especially the weakness in hands & arms. | still hand tremor, but much reduced; some weakness in arms, but mainly after exercise. Some feet swelling past two weeks. | stopping lithium for 2 weeks to see if arm weakness and tremors are due to lithium or ALS progression | | . | 132 | SCHEMERA24 | USA, Connecticut | 34 | M | | September-06 | 47 | sALS/bulbar | No | | February 21, 2008 | | | Carbonate | | 150 mg 2x/day | 450 mg/day | March 31, 2008 | 300 mg 2x/day | April 13, 2008 | | | | | | | >0.2 | March 25, 2008 | 0.4 | May 9, 2008 | 0.5 | June 25, 2008 | | | | | | | May 9, 2008 | eyes burn on occasion | | 47 | 40 | 42 | 42 | 41 | 43 | 40 | 38 | | | BACLOFEN, ELAVIL, CQ 10, VITAMIN E, ORGANIC DIET, CHOLOCAL, PAROTID, AND DHEA | | | | no side effects | experiencing burning eyes | swollen ankles, burning eyes | swollen feet and burning eyes | | . | 133 | Richard Atkinson | GERMANY | 46 | M | | June-06 | 45 | sALS/limb | Yes | 50 mg 2x/day | February 15, 2008 | | | Carbonate | Hypnorex retard | 200 mg 2x/day | 200 mg 3x/day | February 28, 2008 | 1000 mg/day | March 7, 2008 | 800 mg/day | March 27, 2008 | | | | | 0.2 | February 28, 2008 | 0.29 | March 7, 2008 | 0.66 | March 27, 2008 | | | | | | | March 27, 2008 | very itchy dry skin in the face but this may come from the penacilin after I fell down and they had to stich up my face | | 45 | 33 | 34 | 33 | | | | | | | Rilutek since July 2007 2 x 50mg | I will be going tomorrow to a rehabilitation center for 3-4 weeks | | | | | | | | . | 134 | professorcraig | USA | 48 | M | | December-07 | 47 | sALS/bulbar | Yes | 50 mg 2x/day
| February 21, 2008 | | | Carbonate | | 150 mg 2x/day | | | | | | | | | | | 0.1 | February 27, 2008 | | | | | | | | | | | | none | | 47 | 40 | | | | | | | | | 600 MG cOq10, Multivitamin | | | | | | | | | . | 135 | OregonWayne | USA | 51 | M | | February-07 | 43 | sALS/limb | No | | March 1, 2008 | | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | March 28, 2008 | 600 mg/day | April 8, 2008 | | | | | | | 0.3 | March 20, 2008 | 0.3 | April 8, 2008 | 0.3 | April 22, 2008 | 0.5 | May 8, 2008 | | | | | | increased fasciculations, urination | | 43 | 37 | 37 | 37 | 36 | 36 | 36 | 35 | | | Vitamin E, Beta Carotene, Creatine, Vitamin C, Apple cider vinegar tablets | | | | Nausea on dosage increase for a couple of days. Sleep disorder on dosage increase for a couple of days | | thirsty, salty taste in mouth, frequent urination | still increased urination | still thirst and increased urination | . | 136 | wfuller | USA | 47 | M | | December-05 | 45 | sALS/limb | Yes | 50 mg 2x/day
| February 28, 2008 | | | Carbonate | | 150 mg 2x/day | 375 mg/day | March 10, 2008 | 450 mg/day | March 24, 2008 | 525 mg/day | May 7, 2008 | 600 mg/day | August 30, 2008 | | | 0.34 | March 6, 2008 | 0.39 | March 14, 2008 | 0.41 | March 20, 2008 | 0.39 | April 30, 2008 | 0.47 | May 14, 2008 | 0.38 | August 27, 2008 | March 30, 2008 | none | | 45 | 37 | 37 | 37 | 36 | 35 | 34 | 33 | | | multivitamen, C, E, CO10, asprin, glucasamin | | | | | | | | | . | 137 | Fotios Tzimas | GREECE | 48 | M | | March-04 | 47 | sALS/bulbar | No | | February 29, 2008 | March 22, 2008 | | Sulphate | Lithiofor | 330 mg 2x/day | | | | | | | | | | | | | | | | | | | | | | | | No | | 47 | 4 | | | | | | | | | Increlex (IGF-1), Natural Cranberry with Vitamin C, Aloe Vera Drinking Gel | | Stopped lithiujm in order to go back on Saroten | | | | | | | . | 138 | Barbara | UK | 58 | F | | May-05 | 46 | sALS/limb | Yes | 50 mg 2x/day
| March 6, 2008 | | | Carbonate | Priadel | 200 mg/day | 400 mg/day | ? | 600 mg/day | May 8, 2008 | | | | | | | 0.4 | March 31, 2008 | 0.4 | April 21, 2008 | | | | | | | 0.5 | May 19, 2008 | March 31, 2008 | none | feels calmer, and significantly less stiffness | 46 | 43 | 43 | 43 | 43 | 43 | | | | | Other medications:- attenelol, losartin, cozaar, thyroxine, baclofen, valium (occasionally for muscle spasm), oxybutynin, niaspan, HRT Supplements:- Q10, pycnogel (grapeseed extract), alpha-lipoic acid, vitamin C, vitamin E | | Diagnosis is PLS; very slow progression | | | | Unlike many of the other PALS I find lithium completely without problems | | | . | 139 | Edwin | USA, Colorado | 60 | M | AB+ | May-06 | 40 | sALS/limb | No | | February 27, 2008 | | | Carbonate | Roxane | 150 mg 2x/day | 150 mg 3x/day | March 5, 2008 | 150 mg 4x/day | March 20, 2008 | 150 mg 5x/day | April 7, 2008 | 150 mg 6x/day | April 21, 2008 | | | 0.1 | March 4, 2008 | 0.2 | March 19, 2008 | 0.2 | April 4, 2008 | 0.4 | April 28, 2008 | 0.4 | June 17, 2008 | 0.4 | August 4, 2008 | April 28, 2008 | after moving up to 600MG/day I now have mild headaches, cramps, hand tremors, muscle weakness | | 40 | 33 | 32 | 31 | 30 | 28 | 28 | 26 | | | . I am on 5 grams of Androgel (1% testosterone gel) daily and my testosterone level and liver enzymes were last checked (and are ok) on 2/12/2008 | | side effects subsided as of April 4 | | side effects subsided in early April | | | | |
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| | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | . | 140 | Tag | AUSTRALIA | 46 | F | | May-06 | 48 | sALS/limb | No | | March 4, 2008 | August 16, 2008 | | Carbonate | lithicarb | 250 mg/day | 750 mg/day | March 27, 2008 | 500 mg/day | April 14, 2008 | 250 mg/day | July 17, 2008 | | | | | 0.3 | March 24, 2008 | <0.4 | April 1, 2008 | | | | | | | | | | No | | 48 | 19 | | 18 | 18 | 17 | 16 | 15 | | | | | | | Currently reducing lithium dosage in preparation for a stem cell transplant in India | | | | | . | 141 | Blu | USA | 65 | M | | July-06 | 46 | sALS/limb | Yes | 50 mg 2x/day | February 29, 2008 | | | Carbonate | | 150 mg 2x/day | | | | | | | | | | | >0.3 | March 21, 2008 | | | | | | | | | | | | none | | 46 | 40 | 37 | 40 | | | 36 | 37 | | | CoQ10 1000 mg Amino Acids Milk Thistle Chromiium Picobinate Alpha Lipoic Acid 300mg B 12 Complex with C 750 mg B 12 1000 mcg Beta Carotene 25000 iu Coral Calcium1500 mg DHEA 25 mg Flax Seed Oil 1000 mg Grape Seed Extrac 100 mg L-Carnitine 1000 mg L-Lysine 500 mg Melatonin 3 mg Paba 100 mg Selenium 200 mcg Vitamin C 1/4 tblsp 1000 mg Vitamin E 1000 iu Boran 3 mg Chondroitin Glucosamine 1tbsp 1500 mg Dong Qua 550 mg Holy Basil 900 mg L-Theanine 100 mg Magnesium Citrate 1 tbls sp 400 mg NAC 1200 mg Taurine 500 mg Vitamin D 1000 iu Phosphadyl Serine 100 mg Tumeric Ashwaganda | | Nexium 40 mg Rilutek 100 mg Cymbalta 30 mg Amitriptyline 25mg Baclofen 10 mg Lisinopril 10 mg Metoprolol (tartrate) 50 mg Lithium carbonate 300 mg Zantac 150mg | | | | | | | . | 142 | Janie | SOUTH AFRICA | 57 | F | | June-05 | 41 | sALS/Unsure | No | | March 4, 2008 | March 21, 2008 | | Carbonate | Quilonum | 450 mg/day | | | | | | | | | | | | | | | | | | | | | | | | felt weaker, couldn't even pick up a spoon, very weak breathing at night | | 41 | 27 | | | | | | | | | vit E, B12, C | | | stopped lithium in middle of first month because felt weaker, and very weak breathing at night | | | | | | . | 143 | FOX TROTTERS | USA | 37 | M | | May-07 | 38 | sALS/limb | Yes | 50 mg 2x/day | October 29, 2007 | | | Orotate | | 300 mg/day | 300 mg 3x/day | ? | | | | | | | | | 0.5 | March 18, 2008 | 0.4 | March 25, 2008 | 0.5 | April 18, 2008 | 0.5 | May 9, 2008 | | | | | March 18, 2008 | some weakness and can't get to sleep quickly (noted after month 4) | | 38 | 35 | 35 | | | 35 | | | | | | | | | | | some weakness and can't get to sleep quickly | | | . | 144 | Krisncrash | AUSTRALIA | 47 | M | | September-07 | 43 | sALS/limb | No | | March 8, 2008 | | | Carbonate | | 250 mg 2x/day | | | | | | | | | | | 0.4 | March 12, 2008 | 0.4 | March 26, 2008 | 0.41 | May 9, 2008 | 0.39 | June 7, 2008 | 0.4 | August 12, 2008 | | | March 12, 2008 | none | | 43 | 36 | 37 | 34 | 29 | 29 | 28 | 28 | | | | | | | speech is worse and walking is becoming difficult | Frequent urination and increased walking issues | frequent urinating and balance and walking issuse | | | . | 145 | RickC | USA | 58 | M | O- | October-07 | 46 | sALS/limb | Yes | 50 mg 2x/day | March 6, 2008 | July 3, 2008 | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | March 12, 2008 | | | | | | | | | 0.3 | March 12, 2008 | 0.5 | March 18, 2008 | 0.4 | May 19, 2008 | | | | | | | March 18, 2008 | No | | 46 | 42 | 41 | 41 | 38 | 32 | | 32 | | | . I began rilutek on March 5, 2008. I also take 12.5mg of hydrochlorothiazide daily. I take 25mg of benadryl or 2.5mg of diazapam each night as a sleep aid | | | | No change in ALSFRS-R but rapid progression of weakness in right arm and back and neck muscles | | Stopped on July 3 because progression continues to speed along, no apparent benefit. | | | . | 146 | Kensil | CANADA | 68 | M | | November-06 | 48 | sALS/Respiratory | No | | March 7, 2008 | August 17, 2008 | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | March 28, 2008 | 150 mg 4x/day | May 29, 2008 | | | | | | | 0.2 | March 11, 2008 | ? | March 17, 2008 | 0.4 | April 22, 2008 | 0.3 | May 27, 2008 | 0.4 | June 26, 2008 | | | April 22, 2008 | maybe going to bathroom more often because of upped consumption of water only been on Li for 1 day | | 48 | 26 | 28 | 26 | 28 | 25 | 26 | 24 | | | Cold FX and Low Dose Naltrexone and Tylenol Arthritus | | | more fatigue, desire to nap more often | fatigue, more pronounced fasciculations, and weaker when walking | Still experiencing more fatigue during the day. No let up in decline. Legs are weakening, and more frequent and pronounced fasciculations. | The more profound and frequent fasciculations have stopped. Hardly any fasciculations at all. | Planned lith stop on August 17. I feel that I am progressing more rapidly than at any time before taking lithium. | | . | 147 | lgstot | USA | 59 | M | | October-07 | | ALS/bulbar | Yes | 50 mg 2x/day
| March 10, 2008 | | | Carbonate | | 150 mg/day | 750 mg/day | April 3, 2008 | 300 mg 3x/day | April 15, 2008 | | | | | | | 0.5 | April 2, 2008 | 0.3 | June 4, 2008 | | | | | | | | | April 2, 2008 | none | | | | 41 | | 40 | 38 | 35 | | | | Tropine 0.4 MG | | | | | somewhat fatigued, napping more | | | | . | 148 | aloha1 | USA | 50 | M | | September-06 | 48 | sALS/bulbar | Yes | 50 mg 2x/day | March 10, 2008 | March 25, 2008 | | Carbonate | | 150 mg 2x/day | | | | | | | | | | | | | | | | | | | | | | | | weakness, fatigue, dullness of mind, not alert, stomach upset, increased urination, difficulty breathing | | 48 | 23 | | | | | | 15 | | | CQ10, Magnesium, Fish Oil, Mulit-vitamum | | Discontinued after 300 mg/day for 14 days due to severe side effects. Problems began improving after stopping lithium. | | | | | | | . | 149 | Philski | AUSTRALIA | 43 | M | | December-07 | 45 | ALS/bulbar | Yes | 50 mg 2x/day
| February 21, 2008 | | | Carbonate | | 250 mg 2x/day | 250 mg 3x/day | March 11, 2008 | 250 mg 4x/day | March 21, 2008 | | | | | | | 0.3 | February 26, 2008 | 0.3 | March 11, 2008 | 0.4 | March 20, 2008 | 0.4 | March 29, 2008 | | | | | March 20, 2008 | some fasciculations after increase to 250 mg 4x/day, stopped after 4-5 days | | 45 | 45 | 43 | | | | | | | | Milk Thistle, Fish oil, Multivitamins, Grape seed, Antioxidant tabs, magnesium supplement | | | Jaw cramps on yawning, which had become common, have completely stopped since taking Lithium | | | | | | . | 150 | quilter | USA | 53 | F | O+ | September-04 | 43 | sALS/limb | No | | March 3, 2008 | | | Carbonate | | 150 mg 2x/day | 300 mg 2x/day | March 10, 2008 | | | | | | | | | 0.1 | March 10, 2008 | 0.6 | March 24, 2008 | 0.6 | April 8, 2008 | 0.7 | April 15, 2008 | 0.6 | July 2, 2008 | 0.2 | September 2, 2008 | March 24, 2008 | none | | 43 | 31 | 31 | 31 | 31 | 34 | | 35 | | | Synthroid, Citalapram, Muti-vitamin, Vitamin C | | | | | | | | | . | 151 | Titus | CANADA | 56 | M | | November-07 | 46 | sALS/limb | No | | January 24, 2008 | | | Carbonate | PMS | 150 mg 2x/day | 150 mg 3x/day
| February 7, 2008 | 150 mg 4x/day
| March 1, 2008 | | | | | | | 0.2 | February 4, 2008 | 0.3 | February 26, 2008 | 0.3 | March 26, 2008 | 0.4 | April 25, 2008 | | | | | April 25, 2008 | none | decrease in fasciculation, less cramping, less spastic finger movements | 46 | 45 | 45 | 45 | 45 | 45 | 45 | 45 | | | | | | | | | | | | . | 152 | SAKH | GERMANY | 31 | F | O+ | September-06 | 46 | sALS/limb | No | | March 6, 2008 | June 3, 2008 | | Carbonate | Hypnorex Retard | 800 mg/day | | | | | | | | | | | 0.38 | March 19, 2008 | 0.69 | April 17, 2008 | | | | | | | | | April 17, 2008 | None so far | | 46 | 28 | 28 | 28 | 27 | | | 27 | | | Gingko biloba, Vitamin E, Selenium, Asparkam (Mg and K source) | | | Stopped taking rilutek on March 21 | unstable mood, more spasticity, more talking difficulty | stopped lithium; experiencing more slurring of speech and unstable mood. | | | | . | 153 | midwest | USA/midwest | 64 | M | A+ | April 2006 | 45 | sALS/limb | No | | March 13, 2008 | July 12, 2008 | | Carbonate | | 150 mg/day | 300 mg/day | March 20, 2008 | 450 mg/day | April 3, 2008 | 150 4x/day | May 14, 2008 | 450 mg/day | June 13, 2008 | | | 0.1 | March 20, 2008 | 0.2 | March 27, 2008 | 0.4 | April 10, 2008 | 0.3 | May 8, 2008 | 0.4 | May 22, 2008 | 0.4 | May 29, 2008 | April 10, 2008 | increased freuency pf urination, fatigue, swelling of the feet, | | 45 | 43 | 43 | 42 | | | | 40 | | | Baclofen 20mg/day,COQ10 -300 mg/day,L-taurine-200mg/day,Calcium supplements,Alpha Lapoic acid -100mg/day, Omega3 -1 teaspoon | | | | | increase in urination and some weakness | Stopped taking lithium. Experiencing no improvements, and having side effects of increased urgency to urinate, fatigue, and swelling of feet. | | | . | 154 | gramps | USA/Texas | 53 | M | | April 2007 | 32 | sALS/limb | Yes | 100 mg/day | January 7, 2008 | | | Carbonate | | 450 mg/day | | | | | | | | | | | | | | | | | | | | | | | | | | 32 | 27 | | | | 22 | | | | | | | | | | | | | | . | 155 | Vicki S | | 60 | F | A+ | September-07 | 46 | sALS/limb | Yes | 50 mg 2x/day
| March 13, 2008 | April 15, 2008 | | Carbonate | | 150 mg 2x/day | | | | | | | | | | | | | | | | | | | | | | | | none | | 46 | 42 | | | | | | | | | Januvia, Cymbalta, Enablex | | | | | | | | | . | 156 | Nanner | USA/MI | 58 | F | O+ | December-99 | 44 | sALS/limb | Yes | 50 mg 2x/day
| March 13, 2008 | July 12, 2008 | | Carbonate | | 150 mg 2x/day | | | | | | | | | | | 0.4 | April 4, 2008 | 0.3 | April 10, 2008 | 0.3 | July 10, 2008 | | | | | | | April 4, 2008 | none | | 44 | 18 | 18 | | | 15 | | 16 | | | warfin 5mg daily x 6 days, 7.5mg daily x 1 day; zoloft 100mg daily; omega 3 daily; multi-vitamin daily | | | | | | Stopped lithium on July 12. Speech worse, progression more rapid, weaker. | | | . | 157 | Mary Ann W. | USA, Mass. | 52 | F | | November-06 | 44 | sALS/limb | No | | February 29, 2008 | March 29, 2008 | | Carbonate | | 150 mg 2x/day | | | | | | | | | | | 0.2 | March 3, 2008 | | | | | | | | | | | | First week headaches and nausea, but have subsided | | 44 | 26 | | | | | | 20 | | | baclofen, klonopin, tylenol | | | Stopped after one month due to side effects | | | | | | . | 158 | Sundance | USA, Colorado | 63 | M | O+ | May 1998 | 44 | sALS/limb | No | | February 27, 2008 | July 14, 2008 | | carbonate | lithicarb | 300 mg/day | 300 mg 2x/day | March 20, 2008 | | | | | | | | | 0.2 | March 9, 2008 | 0.4 | March 25, 2008 | 0.4 | April 25, 2008 | 0.3 | April 22, 2008 | 0.3 | June 19, 2008 | | | March 25, 2008 | fasciculations in week 2 | | 44 | 24 | 24 | 24 | 24 | 24 | | 24 | | | baclofen, ambien CR, zoloft, lipitor, vit D, C, fish oil, B complex, CoQ10 | range of motion once a week, acupuncture, massage on alternate weeks | seems a little stonger using joystick on power chair- seems to control it better than pre-lithium. Fingers haven't worked for a long time so he uses palm of hand to move joystick. | | | | Stopped on July 14 because dizzy, weak, nauseous, and faint after regular dose. Happened twice. Problems gone after stopping lithium. | | | . | 159 | papadun1953 | | 54 | M | | August 2005 | 48 | sALS/limb | Yes | 50 mg 2x/day
| March 10, 2008 | August 10, 2008 | | Carbonate | | 150 mg 2x/day | 450 mg/day | March 26, 2008 | 600 mg/day | April 15, 2008 | | | | | | | 0 | March 10, 2008 | 0.3 | March 19, 2008 | 0.3 | March 26, 2008 | 0.4 | April 3, 2008 | 0.4 | April 15, 2008 | 0.6 | May 27, 2008 | April 3, 2008 | none | | 48 | 31 | 29 | 25 | | 21 | 21 | | 18 | 9/26/2008 | CoQ10 1600 mg, B12 1000 milligrams, vitamin C 1000 mg, vitamin D 1000 mg , selenium 500 mg,vitamin E 800 milligrams | | | | | | | Stopped lithium on August 10 because of surgery. Appetite is much better now. | |
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| | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | . | 160 | john33 | AUSTRALIA | 56 | M | | July-05 | 48 | sALS/limb | Yes | 50 mg 2x/day
| March 12, 2008 | | | Carbonate | | 250 mg/day | 500 mg/day | March 30, 2008 | | | | | | | | | 0.3 | April 26, 2008 | 0.7 | April 17, 2008 | | | | | | | | | | none | | 48 | 29 | 29 | | | | | | | | | | | | | | | | | . | 161 | joelc | CANADA | 55 | M | | August-05 | 47 | sALS/limb | No | | March 12, 2008 | March 26, 2008 | | Carbonate | | 150 mg 2x/day | | | | | | | | | | | 0 | March 5, 2008 | | | | | | | | | | | | Neck pain/fatigue, headaches, increased urination, increased stiffness in hands/fingers | | 47 | 22 | | | | | | 15 | | | | | | Quit after two weeks because of severe side effects, especially breathing. Now on trach & vent. | | | | | | . | 162 | Rusty | USA, California | 68 | F | | January 2007 | 43 | bulbar | No | | March 20, 2008 | June 30, 2008 | | carbonate | | 150 mg/day | | | | | | | | | | | | | | | | | | | | | | | | | | 43 | 24 | | | | | | | | | lexapro, reglan, saltropine | | | restless leg syndrome at night | | June 30, 2008: "Rusty" is unresponsive, resting peacefully under hospice care. | | | | . | 163 | debi c | USA, Florida | 42 | F | B+ | March 2006 | 45 | fALS/bulbar | No | | March 14, 2008 | | | carbonate | Eskalith | 150 mg 2x/day | | | | | | | | | | | | | | | | | | | | | | | | none | | 45 | 22 | | | | | | | | | synthroid, 112 mg, zoloft, 100 mg, 1000 mg Vit C, multi vit | | | | | | | | | . | 164 | Li2CO3 | CANADA | 64 | M | | May-07 | 48 | sALS/limb | Yes | 50 mg 2x/day
| March 7, 2008 | | | Carbonate | | 150 mg 2x/day | 300 mg/day | March 8, 2008 | 450 mg/day | April 7, 2008 | | | | | | | 0.24 | March 30, 2008 | 0.43 | April 29, 2008 | 0.35 | June 3, 2008 | 0.41 | September 4, 2008 | | | | | April 29, 2008 | No negative nor positive side-effects are noticeable | | 48 | 41 | 39 | 39 | 38 | 35 | | 35 | | | 20 mg Amitriptyline per day to help me sleep | | | | Although ALSFRS-R is the same as last month decline is continuing | No positive or negative effects for the first 3 months. Decline appears to be continuing at the same pace as before starting lithium. | | | | . | 165 | gchatlos | USA | 51 | M | | November-03 | 47 | sALS/bulbar | Yes | 50 mg 2x/day
| March 10, 2008 | June 3, 2008 | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | April 5, 2008 | | | | | | | | | 0.2 | March 31, 2008 | 0.2 | April 30, 2008 | | | | | | | | | | none | | 47 | 8 | 10 | 5 | 8 | | | | | | Hyoscyamine Glycolax Prevacid Dextropromorphan 30mg Quinidine 30mg Lodrane 24 E Fluocinonide Amitiza Desonide lotion .05% | | | | | | Doctor stopped lithium on June 3, 2008 due to elevated liver function test. | | | . | 166 | Bob Brintz | USA | 59 | M | | May-07 | 48 | sALS/limb | No | | March 24, 2008 | July 10, 2008 | | Carbonate | generic capsule | 150 mg 2x/day | 300 mg 2x/day | April 8, 2008 | | | | | | | | | >0.3 | March 31, 2008 | 0.4 | April 14, 2008 | | | | | | | | | April 14, 2008 | After second month: slowness, slightly slurred speech, possible muscle weakness | | 48 | 43 | 43 | 41 | | 39 | 39 | 39 | | | Zetia (cholesterol) Finasteride (benign enlarged prostate) Beta Carotene CoQ10 Fish Oil (Omega 3 Fatty Acid) Melatonin/Theanine Multiple Vitamin Vitamin B Complex Vitamin B12 Vitamin C Vitamin E Aspirin | | | | | STopped lithium on July 10 becasue of lithium study and ALSTDI findings and because of continued progression at the same or faster rate. | | | | . | 167 | handcrankking | USA | 58 | M | | May 2007 | 48 | sALS/limb | Yes | 50 mg 2x/day
| March 20, 2008 | May 10, 2008 | | Carbonate | | 150 mg 2x/day | 300 mg 2x/day | April 10, 2008 | 450 mg 2x/day | April 26, 2008 | | | | | | | 0.1 | April 3, 2008 | 0.2 | April 16, 2008 | 0.4 | <May 10, 2008 | | | | | | | ~May 1, 2008 | increased weakness, increased fasciculations, urinary urgency | | 48 | 40 | 39 | | | | | | 36 | 11/3/2008 | Aciphex, vytorin, liprinisol, diclofenac, suppliments - vitamine E, C, Magnesium, folic acid, Glucossmine, MSM, Cod liver oil | | Stopped lithium on May 10 due to side effects. Elevated liver enzymes found ~May 21. | Very noticeable weakness in legs and torso. | stopped on May 10 because of side effects | | | | | . | 168 | Elizabeth | Oxford, UK | 57 | F | | October 2007 | 46 | sALS/bulbar | No | | February 1, 2008 | | | carbonate | priadel | 600 mg/day | | | | | | | | | | | | | | | | | | | | | | | | dry skin | | 46 | 41 | 40 | 41 | 41 | | | | | | | | | | | | | | | . | 169 | because | surrey bc CANADA | 47 | M | | March-05 | 35 | sALS/limb | No | | March 20, 2008 | April 27, 2008 | June 1, 2008 | Carbonate | | 150 mg 2x/day | | | | | | | | | | | | | | | | | | | | | | | | none | | 35 | 22 | | | | | | | | | effexor 75mg | | | | lithium stopped April 27 - May 31 because of interactions with effexor. | | | | | . | 170 | Shaky | USA | 51 | M | | February-08 | 43 | fALS/bulbar | Yes | 50 mg 2x/day
| March 26, 2008 | | | Carbonate | | 150 mg 2x/day | | | | | | | | | | | 0.6 | April 16, 2008 | 0.4 | August 28, 2008 | | | | | | | | | April 16, 2008 | occasional burning of eyes | | 43 | 40 | 39 | | 36 | 32 | 30 | | | | CoQ10 1200 mg daily, multi vitamin, B50, vit e, vitamin c, alpha lipoic acid twice daily, vit d, vit k, mucinex twice daily, and long term prevacid for gerd and dexedrine for adhd | | | | | | burning eyes | still burning eyes | | . | 171 | LNC | USA, NY | 51 | M | | July-07 | 43 | sALS/limb | Yes | 50 mg 2x/day
| March 13, 2008 | | | Carbonate | | 150 mg 2x/day | 300 mg 2x/day | April 19, 2008 | | | | | | | | | 0.2 | April 26, 2008 | | | | | | | | | | | | none | | 43 | 37 | 37 | | | | | | | | Quinine ( qualaquine) 324mg daily,. Celexa, 20mgs daily., Rilutek 50mg twice daily. | | | | | | | | | . | 172 | DSmith | USA | 48 | M | A+ | April-04 | 48 | sALS/limb | No | | March 31, 2008 | | | Carbonate | | 150 mg 2x/day | | | | | | | | | | | | | | | | | | | | | | | | none | | 48 | 31 | | | | | | | | | | | | | | | | | | . | 173 | Onward | USA | 54 | M | | May-07 | 45 | sALS/limb | No | | February 7, 2008 | | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | May 15, 2008 | | | | | | | | | 0.2 | April 17, 2008 | 0.2 | May 15, 2008 | | | | | | | | | | none | less fasciculations, less cramping, less saliva | 45 | 29 | 33 | 33 | 28 | 27 | | | | | baclofen, nortriptylin, lithium carbonate, multivitamin, Vit E | | | | | | | | | . | 174 | MALVINKA | HUNGARY | 69 | F | | June-07 | 43 | sALS/limb | No | | April 4, 2008 | May 16, 2008 | | Carbonate | | 125 mg 2x/day | 250 mg 2x/day | April 10, 2008 | 375 mg/day | May 5, 2008 | | | | | | | 0.69 | April 22, 2008 | | | | | | | | | | | | none | | 43 | 36 | 36 | | | | | | | | Q10,B KOPMLEX,C,E | | | | stopped on May 16, 2008; "antibiotikum" | | | | | . | 175 | klrkkent | USA, Ohio | 40 | M | ? | October 2005 | 46 | sALS/limb | Yes | 50 mg 2x/day
| April 2, 2005 | | | Carbonate | | 150 mg 2x/day | 450 mg/day | April 15, 2008 | 600 mg/day | April 30, 2008 | | | | | | | 0.3 | April 9, 2008 | 0.3 | April 24, 2008 | 0.4 | May 6, 2008 | 0.4 | June 10, 2008 | | | | | May 6, 2008 | none | | 46 | 19 | 20 | 20 | 18 | 19 | 17 | 18 | | | baclofen 20 mg 4x/day, paxil 20 mg, pantoprazole 40 mg, coQ10 600 mg, vit C 1000 mg, vitamin E 800 iu, multi-vitamin | | | | | | | | | . | 176 | PDADDY | USA, California | 55 | M | ? | April 2008 | 45 | sALS/limb | Yes | | April 4, 2008 | | | Carbonate | | 150 mg 2x/day | | | | | | | | | | | 0.1 | April 4, 2008 | 0.1 | April 11, 2008 | 0.2 | April 18, 2008 | 0.2 | May 28, 2008 | 0.2 | August 13, 2008 | | | May 6, 2008 | none | | 45 | 45 | 44 | | | | 38 | | | | | | | | | | | | | . | 177 | Mrclean | Netherlands | 54 | M | O+ | October-07 | 48 | sALS/limb | Yes | 50 mg 2x/day
| April 7, 2008 | | | Carbonate | | 400 mg/day | 400 mg 2x/day | April 17, 2008 | 200 mg 3x/day | April 25, 2008 | 500 mg/day | June 15, 2008 | 600 mg/day | September 1, 2008 | | | 0.3 | April 11, 2008 | 0.8 | April 18, 2008 | 0.5 | April 25, 2008 | 0.3 | September 1, 2008 | | | | | April 18, 2008 | nead to urinate more | | 48 | 41 | 41 | 40 | 40 | 37 | | | | | . Further I take vitamin E, Omega 3,6,and 9 and a supplement called Stemenhance. | | | | more tired than before | thyroid went from 2.7 on May 19 to 4.9 on June 6, 2008 | | | | . | 178 | Tom M | USA | 51 | M | A+ | August-08 | 44 | sALS/limb | No | | March 31, 2008 | | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | April 9, 2008 | 600 mg/day | April 19, 2008 | 750 mg/day | May 8, 2008 | | | | | 0.2 | April 7, 2008 | 0.3 | April 16, 2008 | 0.4 | April 25, 2008 | 0.3 | May 20, 2008 | 0.4 | June 25, 2008 | 0.4 | August 12, 2008 | April 25, 2008 | Vision problem on 2nd day for 1/2 hour then cleared up. Mild metallic taste. | | 44 | 45 | 45 | 44 | 44 | 44 | 44 | 43 | | | Multivitamin, E, C, B12 CoQ10, Omega3. | | | | | mild hand tremor | | | | . | 179 | Philatm | USA | 53 | M | | December-07 | 46 | sALS/limb | Yes | 50 mg 2x/day
| April 10, 2008 | June 7, 2008 | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | April 24, 2008 | 300 mg 2x/day | May 8, 2008 | 300 mg 3x/day | May 22, 2008 | | | | | 0.1 | April 21, 2008 | 0.14 | May 5, 2008 | 0.19 | May 19, 2008 | 0.27 | June 4, 2008 | | | | | | none | | 46 | 43 | 41 | | | | | | | | Baclofin 10mg 3x/day, Valium 2mg 3x/day, Zesttoretic 10/12.5 1x/day, Vitamin C 3000mg/day, Magnesium 410mg/day, Saw palmetto 1000mg/day, one-a-day multiple vitamin | | | increased leg weakness with increased dosage | At 900 mg/day experienced severe fatigue and weakness in legs. Stopped lithium on June 7. Blood level on June 4=0.27. | | | | |
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| | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | . | 180 | sanscott | Canada | 57 | F | O | April 2004 | 48 | sALS/limb | Yes | | March 18, 2008 | | | Carbonate | | 300 mg 2x/day | | | | | | | | | | | 0.4 | April 2, 2008 | 0.4 | May 11, 2008 | | | | | | | | | April 4, 2008 | none | | 48 | 10 | 10 | 10 | 8 | | | | | | Cq10, Vit C, b, e, Cranberry, stool softeners, Paxil, Acidophilus, Omega 3 Serina laxative, multivitamin, furosemide, metformin, paroxetine, celebrex, omeprazole, altace | | | | | | | In hospital all month with pseudenomas infection | | . | 181 | PBB | USA | 49 | M | AB+ | February-05 | 46 | sALS/bulbar | Yes | 50 mg 2x/day
| April 6, 2008 | | | Carbonate | | 150 mg 2x/day | 100 mg/day | August 9, 2008 | | | | | | | | | | | | | | | | | | | | | | No | | 46 | 22 | 21 | 24 | 24 | 24 | 23 | 23 | | | Plavix, protonix, ativan, | | | | | | | | | . | 182 | mitchfirst | USA | 58 | M | O+ | February-08 | 47 | sALS/bulbar | Yes | 50 mg 2x/day
| March 27, 2008 | | | Carbonate | | 150 mg 2x/day | 450 mg/day | May 19, 2008 | | | | | | | | | 0.4 | April 10, 2008 | 0.38 | July 24, 2008 | 0.4 | May, 2008 | | | | | | | April 10, 2008 | none | | 47 | 45 | 44 | | 44 | 43 | 43 | | | | CoQ10, B complex vitamins | | | | | | | | | . | 183 | jhallowell | USA | 44 | M | O+ | August-03 | 48 | sALS/bulbar | No | | March 17, 2008 | | | Carbonate | | 300 mg 2x/day | 600 mg 2x/day | March 31, 2008 | | | | | | | | | 0.044 | March 24, 2008 | 0.12 | March 31, 2008 | 0.33 | April 8, 2008 | | | | | | | | tired, loss of appetite & my concentration when writing is challenged. | | 48 | 16 | | | | | | | | | 150 mg/day of amitripyline & 1000 mg 2x a day of Metformin for my diabetes. | | | | | | | | | . | 184 | Tullnut | USA, Nevada | 56 | M | O+ | September-06 | 47 | sALS/limb | Yes | 20 mg 2x/day | February 25, 2008 | | | Carbonate | | 150 mg 2x/day | 300 mg 2x/day | | | | | | | | | | 0.1 | March 13, 2008 | 0.4 | April 4, 2008 | 0.4 | May 15, 2008 | 0.5 | August 7, 2008 | | | | | April 4, 2008 | none | | 47 | 41 | | | 41 | 40 | 40 | 39 | | | CoQ-10 1800mg/day for ALS.. Other meds include citalopram 40mg/day, saw palmetto, levothyroxine0.15mg and aspirin 81mg daily | | | | | | | experiencing excessive sweating | | . | 185 | panamokapal | USA | 45 | F | A+ | December-05 | 48 | sALS/limb | Yes | 50 mg 2x/day
| April 12, 2008 | | | Carbonate | | 150 mg 2x/day | 150 mg 3x/day | April 29, 2008 | 600 mg/day | May 24, 2008 | 450 mg 2x/day | June 13, 2008 | | | | | 0.13 | April 29, 2008 | 0.22 | May 24, 2008 | 0.36 | June 13, 2008 | 0.47 | July 1, 2007 | 0.57 | August 4, 2008 | | | | bad taste in mouth | | 48 | 38 | 38 | 38 | 38 | 36 | 36 | | | | paxil, ambien, baclofen, baby aspirin, tramadol/ vit c, a, e , d, coq10,creatine,nac,al lip acid | | | | ALSFRS-R same this month but several things close to changing. | | | | | . | 186 | majestik12 | USA | 31 | M | | August-08 | 48 | sALS/limb | Yes | 50 mg 2x/day | February 1, 2008 | August 3, 2008 | | Carbonate | | 150 mg/day | 750 mg/day | <May | | | | | | | | | 0.21 | March 4, 2008 | 0.27 | March 13, 2008 | 0.39 | March 20, 2008 | 0.24 | May 28, 2008 | | | | | | | | 48 | 39 | | 35 | 34 | 33 | 30 | 28 | | | multi vit, acai, coQ10, b12 | | | | | | | | | . | 187 | luvthechiefs | | 42 | F | A- | April-08 | 40 | fALS/limb | Yes | 50 mg 2x/day
| April 14, 2008 | | | Carbonate | | 450 mg/day | 600 mg/day | May 12, 2008 | 750 mg/day | May 16, 2008 | | | | | | | 0.2 | April 22, 2008 | 0.3 | April 30, 2008 | 0.3 | May 14, 2008 | | | | | | | | a little dry mouth and maybe bad taste. that's it. i did have one brief experience the first day where i was very *aware* of my tongue. one shouldn't be aware of one's tongue. weird. it passed quickly and has not returned | | 40 | 40 | 40 | | | | | | | | 400mg of CoQ10 and a multivitamin | | | ankles and feet swelling badly | | | | | | . | 188 | Tamatik | | 64 | M | | January 2008 | 44 | sALS/bulbar | Yes | 100 mg/day | April 1, 2008 | September 1, 2008 | | Carbonate | | 300 mg/day | 450 mg/day | April 18, 2008 | | | | | | | | | 0.2 | April 7, 2008 | <0.2 | April 14, 2008 | 0.35 | May 12, 2008 | 0.45 | July 10, 2008 | | | | | July 10, 2008 | drwosiness immediately after taking a tab | | 42 | 42 | | 43 | 43 | | | | | | | | | | | | | stopped lithium because of great stomach discomfort | | . | 189 | cbustos | Spain | 46 | F | | May 2007 | 46 | sALS/bulbar | Yes | 50 mg 2x/day | April 19, 2008 | | | Carbonate | magistral | 300 mg/day | 450 mg/day | April 30, 2008 | | | | | | | | | 0.19 | April 25, 2008 | 0.35 | May 6, 2008 | | | | | | | | | | | | 46 | 27 | | | | | | | | | mTizanidine (Sirdalud), Noni juice, coQ10, multivitamin | | | | | | | | | . | 190 | linb | USA | 63 | F | A+ | February 2008 | 45 | sALS/bulbar | No | | April 10, 2008 | | | Carbonate | | 450 mg/day | 150 mg/day | August | | | | | | | | | 0.3 | May 6, 2008 | | | | | | | | | | | | with increase from 300 to 450 deep fasciculations, feeling of unwellness, mood down. Felt better on 300 mg. | | 45 | 39 | | | | 30 | | | | | | | | | | | Went off lithium for a month; was rageful and crying all day at 450 mg/day. Now on 150 mg/day. | | | . | 191 | Marie | Canada | 52 | F | O+ | September 2005 | 47 | sALS/limb | No | | May 16, 2008 | | | Carbonate | | 150 mg 2x/day | 450 mg/day | June 7, 2008 | | | | | | | | | 0.3 | May 28, 2008 | 0.3 | June 4, 2008 | 0.4 | June 18, 2008 | | | | | | | June 18, 2008 | feelings of nausea | | 47 | 39 | 39 | | | | | | | | Mutli B vitamins (100mg), B12 (75mg), C(4000mg) D (1000 IU), E(400 IYU), zinc (10 mg), magnesium citrate (10 mg), magneisum chloride (5 ml), COQ10 (300 mg) ALA-R(300 mg) Grapeseed, Gingko Bliboa, Liver detox, blueberry capsurles, cod liver oil (5 ml) fish oil (10 ml), melotonin (6 mg) | | | | | | | | | . | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | . | | | Click on the link below to calculate your ALSFRS and ALSFRS-R - today, after 1st, 2nd, 3rd ... month on lithium. | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | . | | | ALS Functional Rating Scale [ALSFRS] and ALS Functional Rating Scale-Revised [ALSFRS-R] | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | . | | | http://www.outcomes-umassmed.org/als/alsscale.cfm | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | . | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | | |
[1] sporadic = sALS
familial = fALS
bulbar = bALS
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