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I’m a 50 year old male and have been having twitching that started in my calves and now is randomly all over. I recently had an ncs and an emg. My emg came back normal but my ncs came back peroneal nerve neuropathy with no signs of entrapment. I walk with light limp because my top of foot hurts and side of knee. I’m worried about als and that’s all I can think about. Any ideas out there?
lgelb
lgelb
You will get more readers if you post this in the "Could It Be" section. Profile posts are not widely read. But I'd ask for PT for the peroneal nerve issue, which may have affected other muscles/nerves involved in walking, and of course pay attention to your seated posture, keeping feet on floor and knees at 90-degree angle as they will tell you.

There is zero reason to be worried about ALS.
Hello everyone! I was here 2 years ago for twitching which started March 2022.

The twitching disappeared in 2023. Actually, I was dealing with the loss of a familiy member and if there were twitches, I did not notice these. This February 2024, I noticed my upper deltoid "thumps up" of "punches up" even at rest. Sometimes it is my knee. When I hit it or whack it, it stops. I am 55F already, Asian female. Thank you!
lgelb
lgelb
You will get more readers if you post this in the "Could It Be" section. Profile posts are not widely read. But twitches that you can ignore for whatever reason (sorry for your loss) without loss of strength or mobility are hard to worry about. See your PCP if you are concerned, as you obviously are. They can baseline your strength.
Hi Ricky, thank you for posting your story. I am going through almost the same exact thing. Even the twitching starting after investigating ALS. Wanted to know how you’re doing now? Do you still get cramps and twitches? How’s your anxiety?
blh8287
Been awhile since I've been on here. My neurologist and researchers believed my problems were from a mutation they found on IRF2BPL.

Spacisity in legs and dystonia all upper body. They ended up implanting a Baclofen Pump.

A couple months back, my brother got diagnosed limb onset ALS.

We both have pathogenic c9orf72 expansion. I'll be seeing an ALS specialist in a couple weeks
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
V
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
Y
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.
V
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!
I read over your post. Will say a prayer for you that you do not receive the news you are fearing at your Monday appointment.
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