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jwa80

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Learn about ALS
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Bonn
Hi! Am somewhat worried. Again. I'm 37. Bodywide random twitching (24/7 in legs) shortly after panic attacks in July 2016. Dx is generalized anxiety disorder and benign fasciculation BFS for 18 months now. However:

Does percussion myotonia -like behaviour happen in some MND? I have it in both thenars and it doesn't seem part of classic BFS.

My neuro proff in March 2017 was perplexed, due to clean clinicals in July 2016 (dx: GAD) and clean comprehensive EMG+NCS+strength in December 2016 (dx: BFS at about 6 months of twitching). He suspected some chemical imbalance and I should revisit him again. Alas we moved countries and I didn't visit any neuro yet.

Some weeks ago I was dx Crohn's disease, but mild, and no deficiencies nor chemical imbalances found. There goes a reasonable cause for the thenar percussion myotonia. Also a bladder fistula with mass was found, gastro thinks not from Crohns, no real diagnosis yet.

Last week I noticed potential atrophy in the right leg above the knee. A photo is attached. I can't decide "what" this is... Does it look like atrophy?

Lower back is strange as well. Got mild dull muscle aches as if too tense, tailbone to hip region, for many months now. It migrates a bit. Had only a few scitica bony stings. It was less when lying down, but these days mildly aches even when in bed. The spine in an abdominal CT July 2016 looked perfectly fine. Sometimes I have dull "bubbles" between lower front ribs as well, gastro saw nothing, thinks maybe muscle tension...

Still need to visit a GP and neuro for these three; percussion myotonia re-check, lower back issue, and opinion on the knee/leg "atrophy".

All has me scared again, might this be some MND?

The odds would be immensely low, or?
 

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Apologies! I used the forum search now. Not a single mention of percussion myotonia. That probably answers my own question!

Also found a paper on Crohn's disease and common neurological manifestations, including MMN and CIDP others. Will try to visit a neuro for the "atrophy".

Tried to delete my post but could not. Sorry for wasting your time with my worries...
 
In all your words and the photo, I see two and only two things might be a problem.:

First, your back hurts. Any doctor can fix this. Probably need to strengthen your core muscles that keep your spine aligned.
Second, that anxiety is terrible--it will destroy your life if you don't get it under control.

ALS/MND: no, nada, zip, nicht jezt, nicht heir, und wird niemals dein Problem sein. Enjoy your life.
 
The "myo" in "myotonia" refers to muscle problems. ALS is a nerve problem. So myotonia has nothing to do with MND. There are many inherited forms of myotonic dystrophy, as well as sporadic (not inherited) myopathies that have similar symptoms. So if your symptoms worsen or are disabling, you might see a neurologist at an academic center, but you're in the wrong place here. I would certainly follow up on the bladder issue.

Best,
Laurie
 
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