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Sarahx

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I've spent months looking for an explanation for whats going on, my doctor said "i dunno" and that was about it.

All the images Ive looked up of hand muscle atrophy are spot on. Some of the pictures I had to check to be sure weren't mine!

The difference being, and its a big one, it happens periodically. Sometimes a month or weeks between, and the 'attacks' last 5-7 hours. However, its not just my hands, its everywhere. Legs, feet, stomach, arms, face, tongue, hands etc.

And theres a few symptoms I can't find anywhere. It starts like a quick and severely painful jab of a needle, sometimes enough to make me seriously jerk, and it lasts 2-3 seconds. The area where the pain occurs has that sort of indentation you see in the pictures.

When it fades after a 10-20 seconds, theres this white looking spot under the skin. Its slightly swollen, and the 'white' spot almost looks like a blister under the skin, or even s scar. But that fades after a few minutes.

If its a particularly bad attack (you can see it best in the hands) and theres multiple ones in quick succession around the same area, the spots look like they overlap each other under the skin.

The closest Ive gotten to anything similar is muscle atrophy or ALS atrophy, but they both look like degenerative conditions rather than chronic.

I was also diagnosed with Trigeminal Neuralgia about 8 years ago, but this has started a few months ago.
 
Might be time to find a new doctor, but the great news is that whatever is happening with you is NOTHING like ALS, not even a tiny bit.

That is going to be all we can tell you here as we only know about ALS.

I hope you find an answer soon.
 
I figured it wasn't muscle atrophy on its own, again that isn't really a chronic thing. But I'm glad it isn't ALS!

(Id love a new doctor X_X my last one was worse. But the waiting list for that in my town is a good 3-4 years)
 
Sorry you've got TN, Sarah. I know that hurts.

(Apologies to Tillie. I've already written this huge thing, so I'm gonna post it.)

In ALS, the "atrophy" doesn't come and go, and the muscles don't "attack" from time to time. In ALS, atrophy happens when a muscle has been limp and unused, not contracting for weeks or months.

You see, in ALS, the motor nerves in the brain and brain stem are destroyed, so the corresponding muscles don't get the signal to contract. So they never work again. They're limp, useless, paralyzed. There's no pain, no feeling of weakness or burning or exhaustion. They just never contract again. They don't come back and attack later.

You're describing a painful contraction, so not ALS. ALS is when your muscle WON'T contract anymore. And there's no pain associated with it.

Also, you described these attacks happening all over your body. But in ALS, the motor nerves are destroyed one by one in serial order. So in the beginning of ALS, muscles become affected one by one, usually next to each other. You might spend some months watching your foot and then your leg get paralyzed. But it would be unusual for a hand, leg, and stomach to be affected at the same time.

I'm not a doctor, but I'll venture a guess what's going on. The nerve is telling the muscle to cramp tightly, thus the pain and the deformation (dent). Once the muscle releases, the white spot is where the blood has been pushed out of the area, like if you pressed down on your fingernail or if you pinched yourself. In a few seconds, the blood returns and so the white spot turns normal.

So it's not ALS, but it's disconcerting anyway. If it's disabling you, say, at work, you definitely want to diagnose and cure it. Ask your doctor for a referral to a neurologist.

Just guessing, but Klonozapam or Mirapex might help this. Those meds work for twitches and Restless Legs Syndrome, where the muscles suddenly contract.

Anyway, I suggest you get another doctor.

--Mike
 
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