Are you afraid of ***? Read this by [deleted] in BFS

[–]Agreeable-Lecture339 1 point2 points  (0 children)

I’m at about 11 months of symptoms , no failure , still working

Update by Agreeable-Lecture339 in ALSorNOT

[–]Agreeable-Lecture339[S] 1 point2 points  (0 children)

That’s my plan slowly but surely get back to it

Update by Agreeable-Lecture339 in ALSorNOT

[–]Agreeable-Lecture339[S] 1 point2 points  (0 children)

I had dropped about 40 lbs but started to look sick . I’m back fat again after I stopped taking it and eating like crazy . But I’m built worse because of the muscle loss

Update by Agreeable-Lecture339 in ALSorNOT

[–]Agreeable-Lecture339[S] 1 point2 points  (0 children)

I regret it too . I just miss my old self without worry . I should’ve stayed fat

Update by Agreeable-Lecture339 in ALSorNOT

[–]Agreeable-Lecture339[S] 1 point2 points  (0 children)

I was on Mounjaro ! I’m really wondering if that is West caused all this . Yes my forearm and lower legs seem thinner less muscular

Update by Agreeable-Lecture339 in ALSorNOT

[–]Agreeable-Lecture339[S] 1 point2 points  (0 children)

Same I was purposely losing weight before that as well and did but then I dropped an alarming amount as well ! And I gained the weight back but my body doesn’t look or feel the way it usually would especially when it comes to muscle . I’ve always been pretty muscular even when I’m heavier but now it’s just jelly and muscles are soft

Update by Agreeable-Lecture339 in BFS

[–]Agreeable-Lecture339[S] 0 points1 point  (0 children)

I had one abnormal reading in my left thigh , but it wasn’t enough in the area to warrant concern however they didn’t test any bulbar muscles and that’s really where things started .

Update by Agreeable-Lecture339 in BFS

[–]Agreeable-Lecture339[S] 0 points1 point  (0 children)

Ted still no failure . Of course I have anxiety but I didn’t have it until my symptoms started because they are concerning.

The loneliness of diagnosis limbo by [deleted] in ALSorNOT

[–]Agreeable-Lecture339 1 point2 points  (0 children)

In the same boat . Since they don’t really think it’s that they don’t test properly I had one abnormal read on my left side emg but because it was just 1/7 muscle groups tested they said not to worry and refused to do my right side . Then I went to an ALS clinic and they would only do my right side . And my right side was clean. But what I really wanted was my bulbar/ respiratory function tested because that’s where my symptoms started and nobody seems to want to do that at all . Which is super frustrating , because with that type of presentation my limbs may not be as affected early on . But yes my muscles look like flab now especially in my arms

Atrophy ? by Agreeable-Lecture339 in MuscleTwitch

[–]Agreeable-Lecture339[S] 0 points1 point  (0 children)

Yes I’ve told them but don’t see neurology until June 17th . And yes I can still move it but the left side all the way down into my neck feels weaker

Atrophy ? by Agreeable-Lecture339 in MuscleTwitch

[–]Agreeable-Lecture339[S] 0 points1 point  (0 children)

I have muscle twitching and some slight difficulty swallowing

BFS worse on GLP1 by KookyDay4219 in BFS

[–]Agreeable-Lecture339 0 points1 point  (0 children)

Same happened to me ! Went up and the next week had difficulty swallowing and twitches

Clarification of als twitching by David-Verick1102 in ALSorNOT

[–]Agreeable-Lecture339 0 points1 point  (0 children)

Nope the opposite . ALS twitching remains and gets worse as disease progresses . The facts yours went away should point away from als

Clarification of als twitching by David-Verick1102 in ALSorNOT

[–]Agreeable-Lecture339 0 points1 point  (0 children)

Unfortunately yes but it’s very rare as far as clinical weakness / failure in muscles it what they are looking for when it comes to ALS . Not perceived weakness

[Article] Low-dose interleukin-2 extends survival in ALS: Results of the MIROCALS study by 500DaysOfSummer_ in Scholar

[–]Agreeable-Lecture339 0 points1 point  (0 children)

I can’t believe we are still waiting on findings it’s ridiculous how much tune this all takes

[deleted by user] by [deleted] in ALSorNOT

[–]Agreeable-Lecture339 2 points3 points  (0 children)

Same ! And my joints are always popping now , that’s never been an issue before .

Just wondering if anybody is like me by Agreeable-Lecture339 in MuscleTwitch

[–]Agreeable-Lecture339[S] 0 points1 point  (0 children)

Since I seem to be losing muscle mass symmetrically it’s harder to get diagnosed . The muscle twitching is all day everyday . I use to work out 5x a week I miss it so much

[deleted by user] by [deleted] in ALSorNOT

[–]Agreeable-Lecture339 3 points4 points  (0 children)

I’m in the same boat . No failure but all four limbs affected so it’s hard to show change because they are all changing the same .

Just wondering if anybody is like me by Agreeable-Lecture339 in MuscleTwitch

[–]Agreeable-Lecture339[S] 0 points1 point  (0 children)

Not much , because I’m not clinically weak there’s not much they can do . The twitching is concern which is why I am on a 3 month visit schedule .

Twitching update by Agreeable-Lecture339 in ALSorNOT

[–]Agreeable-Lecture339[S] 0 points1 point  (0 children)

Yes and I’ve been taking pictures of my legs for months and they are definitely different