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vicmaine

New member 60 From Lewiston, Maine
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    Hi Vic. I am C9orf72 positive and my symptoms started just like you with right foot drop about 3 years ago. I now have both legs affected and pelvic muscles and am using a wheelchair. I'm trying a new cocktail of cheap available drugs based on my own research. Metformin is a MUST HAVE if you are C9. Laura Ranum's work is amazing and there is a trial ongoing in Florida. Also trying Terazosin and dutasteride. Vivienne
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    Vivienne47
    I have been taking metformin extended release for a week now. I started on the normal one. Ramping up dose a week at a time and currently on1500mg. So far no side effects in stomach but interesting that you mention extra twitching. I’m lying awake writing this because my bad led is twitching. Re terazosin, I have decided to use very small dose of this as there is reported biphasic effect in a Parkinson’s model
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    yogi123
    Thank you both. I have the extended release and a prescription for terazosin. I was on 1000mg of normal metformin and was twitching more in my legs. I put it down maybe inflammation in my gut. The tummy troubles and twitching stopped when I dropped back down to 500mg. For me, it could have also been worry. Whenever I worry I twitch. I will look up biphasic with terazosin, thank you.
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    Vivienne47
    I have calculated that 0.5 mg Terazosin in humans roughly equates to the 100 micrograms per kg dose in the ALS mouse model so that’s what I’m taking now. An unexpected effect of metformin - it made my blood sugar drop and I felt very unwell, until I had a sugar fix. It’s sort of obvious in hindsight that it might do this to a non diabetic. Bonus is that my husband is now buying me lots of chocolates!
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