|07-06-2016, 10:03 AM||#1 (permalink)|
Join Date: 2015
City: Middle America
Interest: I have been diagnosed with ALS.
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.
|07-06-2016, 10:24 AM||#2 (permalink)|
Extremely Helpful Member
Join Date: 2012
Interest: I have been diagnosed with ALS.
Re: Stopping Methylcobalamin??
Tough call and we all struggle with it. What to take. You just can't take everything- financially and practically. The pepple who benefited from the methylcobalamin started within a year of symptom onset and when they were still able to live independently which sounds like you? And took it for at least a year and lived significantly longer than those who did not. I have seen nothing describing their course of illness so not sure if we are supposed to notice anything. I can't tell either if it makes a difference.
My sister took it within about a year of onset for some months though not a year. She lived longer than the average for our genetic form by about 2 years. But she did a lot of different things over that time. And both my aunt and mother who did nothing lived longer
There was an interesting study that is being posted about a study of identical twins with sod1 one has als the other not yet and some biomarker differences. The inventor of lunasin is saying lunasin helps this. There is a post the tdi forum where someone is listing lots of other ways to address this vit d and turmeric were on it
|Thanks from|| |
|balance, chair, cramps, diagnosed, early, family, lunasin, magnesium, money, onset, power, power chair, progression, symptoms, tongue, twitching, walker, work|
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