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Old 07-06-2016, 10:03 AM #1 (permalink)
CarolSue CarolSue is offline
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Join Date: 2015
City: Middle America
State: Kansas
Country: US
Diagnosed: 01/2016
Interest: I have been diagnosed with ALS.
Posts: 93
CarolSue is on a distinguished road
CarolSue CarolSue is offline
New Member
Join Date: 2015
City: Middle America
State: Kansas
Country: US
Diagnosed: 01/2016
Interest: I have been diagnosed with ALS.
Posts: 93
CarolSue is on a distinguished road
Default Stopping Methylcobalamin??

I am considering stopping my daily 25 mg Methylcobalamin injections.

I have limb onset, diagnosed January 2016. I believe my symptoms began early spring 2015. I've gone from a "gait change" in very early spring 2015 to slight limp in June/July2015. Wasn't able to hold my weight when attempting to climb onto a chair (used it as a step ladder) last August. It has progressed from there to my right hand as well. Thumb and forefinger don't work well at all. I have cramps/twitching all over and more recently the twitching/buzzing on the end of my tongue is more frequent. So here we are a little over a year from onset and I'm about ready for a power chair. I use my walker about 60 - 70% of the time now. My balance is the worst thing I'm dealing with now.

My question is....for those that have tried daily intramuscular Methylcobalamin do you feel it has worked for you? I shutter to think where I'd be right now without the shots if they are really working! I read somewhere to give it at least 1 to 3 months to assess if it is helping. It's been 3 months and I don't feel like its slowing the progression. I've noticed that about every 2 - 3 weeks I have progressed to a new level. Enough that my husband notices.

So I'm asking for advise. Have I given it enough time? Should I quit wasting my money? It's about $400 per month. Would my money be better spent on Lunasin? Please, please let me know your thoughts. My family doesn't want me to quit taking it.

Side note: Also taking Magnesium, Vit D3, Vit C, Vit E, Beta Carotene, Turmeric, CoQ10, WAS taking Acetly l carnitine but stopped because when I started taking it...that is when my balance got considerably worse. Probably a coincidence, but read here that someone thought it sped up their progression, so I stopped it.

Please let me know your opinions. I know everyone is different, different progressions, but seeking out others opinions and experiences.

CarolSue
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