Wburell
Member
- Joined
- Feb 6, 2017
- Messages
- 21
- Reason
- PALS
- Country
- US
- State
- North Carolina
- City
- Raleigh
Haven't found much related to this but having an issue maybe someone can help with. Was diagnosed about a month and a half ago with ALS.
At the time Fasciculations were isolated to my left leg in which I have foot drop. They were absolutely pounding jumps at my knee cap. Maybe an occasional twitch in my arm when laying a certain way.
2 weeks later I started getting them in my stomach and right leg.
Now I have very mild fasciculations in my neck, arms, and back.
Slightly more annoying and harder fasciculations in my lower back, stomach, and legs.
I also tested positive in my blood test for celiac 4 weeks ago and have been Gluten free since minus a few screw ups. Biopsy scheduled for May.
So basically when I went GF the fasciculations went wild. When I get hungry they get more wild to the point I can see the jumps through 2 shirts and jeans.
This causes an issue at bed time because I can't eat after my riluzole and I can't sleep at all. I take melatonin and it doesn't phase me. I can no longer lay a certain way to get rid of them.
Has anyone else had similar problems with them being worse a 2-3 hours after a meal and any advice for sleeping? Just odd I go Gluten Free and I get signifigantly worse in symptoms
At the time Fasciculations were isolated to my left leg in which I have foot drop. They were absolutely pounding jumps at my knee cap. Maybe an occasional twitch in my arm when laying a certain way.
2 weeks later I started getting them in my stomach and right leg.
Now I have very mild fasciculations in my neck, arms, and back.
Slightly more annoying and harder fasciculations in my lower back, stomach, and legs.
I also tested positive in my blood test for celiac 4 weeks ago and have been Gluten free since minus a few screw ups. Biopsy scheduled for May.
So basically when I went GF the fasciculations went wild. When I get hungry they get more wild to the point I can see the jumps through 2 shirts and jeans.
This causes an issue at bed time because I can't eat after my riluzole and I can't sleep at all. I take melatonin and it doesn't phase me. I can no longer lay a certain way to get rid of them.
Has anyone else had similar problems with them being worse a 2-3 hours after a meal and any advice for sleeping? Just odd I go Gluten Free and I get signifigantly worse in symptoms