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r/spinalmuscularatrophy

▲ 4 r/spinalmuscularatrophy+1 crossposts

Stomach pain and edema in the sigmoid and descending colon

Hello guys, I have been having some gastric issues recently. I went for an ultrasonography and they found some edema and inflammation in my sigmoid and descending colon. I do have a curvature of the spine(I have not had spinal fusion nor I don't think I will have one as it will restrict my mobility further and would cause problems with my transferring methods) and when I sit I tend to bend towards my left side almost like a C, I sit for the better part of the day, maybe around 10 hours. My GP said that it might be because of the posture. I have also been experiencing mild constipation. Well I wouldn't say impacted stool or something. It's just that feeling of bowels not completely empty.

I just want to know if any of you have experience with this and if anyone has a remedy or solution for this. Honestly now the only thing that I have going for me in my life is having the freedom to eat things that I want. I don't want to lose that too

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u/starlord_1291 — 4 days ago
▲ 1 r/spinalmuscularatrophy+1 crossposts

Hello guys !

I’ve been dealing with muscle twitching and ALS fear for around 3 years now. The twitching started in my legs and eventually spread all over my body, including calves, arms, back, feet, and even my tongue.

Over time I became hyperfocused on every small asymmetry or dent in my muscles and started constantly checking for atrophy. Recently I’ve been especially worried about my right foot/ankle area and whether it looks like muscle wasting.

What has been done so far:

  • Multiple neurological evaluations
  • Multiple EMG/ENMG tests over the years
  • Leg ENMG in December 2023
  • Whole-body EMG testing
  • EMG of arms/hands and legs
  • Tongue EMG
  • MRI studies
  • Clinical strength testing by neurologists

Latest EMG was normal, and all EMGs/ENMGs have been normal with no evidence of motor neuron disease according to neurologists.

I do have widespread fasciculations daily and sometimes internal vibrations/tremor feelings, fatigue, brain fog, foot discomfort, and health anxiety. Neurologist suggested benign fasciculation syndrome (BFS).

Despite this, I still obsess over whether certain areas look abnormal, especially my foot and ankle. I’m posting photos because I keep worrying about possible atrophy there and wanted outside opinions from people experienced with BFS/ALS anxiety.

Has anyone else gone through this cycle of constantly checking body parts even after clean EMGs?

u/Rich_Session8606 — 4 days ago
▲ 3 r/spinalmuscularatrophy

Can this be SMA?

I will follow up with symptoms, progression and tests taken-

Symptoms:
- weakness
- fasciculations
- shortness of breath

Progression:
I started the summer off with shortness of breath while exercising. Soon after both my arms/shoulders started getting weaker, and then later both my legs/thighs started also getting weaker. 3 months after the first symptoms, I started twitching all over.

Tests taken:
ANA - negative
Ck, iron, cortisol, TSH, NfL - normal values
Vitamins, minerals, electrolytes all normal
Brain mri - normal

If anyone has some advice, or some suggestions on what this could be I will gladly listen!!

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u/GHSGDD — 7 days ago