ALS Support Community

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Mike12345
Yeah interesting.. there any meds or anything to treat hyper excitability syndrome? I assume doesn't explain the atrophy hey?
Did u ask about mnd and what was her response ?
Yeah her assessment no clinical weakness. Reflexes have been fine throughout this.
M
Mike12345
I feel The suggested reason for my problems is a pure guess, at this stage. And no info or proof in literature, or in my bloods to back up having tainted supplements
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Arran
Yeah she doesn’t seem to think I have mnd! But gives no explanation to my muscle atrophy! Doesn’t acknowledge it! It seems unless it’srea bad they don’t take notice
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Arran
It’s really bad*
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Arran
Where is your atrophy and weakness worst?
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Fasciculation1
Hey Mike, I’ve never had the hair stand on my arm as in static, but about a year before all this started, I started having a lot of static shocks that persist until this day. Often when I shake hands with someone, or stick my key in the door or put my hand on the car handle to open it, I’ll get a static shock. With the handshake, the person I’m shaking hands with gets it too. Lol.
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Mike12345
Arran - atrophy is worst mainly left sided sole of foot, calf, bicep, face/ jaw line. Both hands are cactus. Right calf is bad as well.
My entire body is sort of lost bulk and tone as well.
M
Mike12345
Yeah, it seems that many hyperchondriacs (hopefully we are them) mean that neurologist don't take us seriously, and put us in that category.
They did acknowledge and agree with the atrophy, loose skin all over, but no good reason given.
And fasics - strange mate!
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Arran
When you say both hands are catus! What can’t you do with them?
M
Mike12345
Thenar muscle and palm is all wasted quite severely.
They are very rigid and feel weird like they are about to stop. But for now I can still use them
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Arran
And the emg showed nothing in the hand muscles?
M
Mike12345
It showed "chronic neurogenic changes bi laterally".
So yeah it did find something.
But they say it is because of me possibly aggitating my ulnar nerve with my previous weight training.

Doesn't explain the rest of the wastage ! Especially my face etc.
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Fasciculation1
Any cramps? How are your twitches? Rapid fire body wide that come and go or are they persistent in any certain area?
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Arran
I’ve been given the same answer about the ulnar nerve, but mine is due to a really bad break 20 years ago! So is she saying that both ulnar nerves are agitated?
M
Mike12345
No real cramps as yet. Muscle tightness for sure. Some twitches are constant others will fire for a while depending how I'm lying or sitting. I've got like a permanent quivering feeling in my hands, tongue, face a sole of foot.
M
Mike12345
Yeah she is saying both the ulnar nerves... May explain one muscle wasting, but a bit convenient that the others have gone a t the same time. You would think it would be obvious to them that this is abnormal?
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Arran
I also have that quivering feeling! It’s ridiculous to think that both your ulnar nerves would play up, and all of a sudden
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Fasciculation1
Yeah, I was thinking the same thing. Convenient that all of a sudden my atrophy and twitching started simultaneously.
M
Mike12345
I say that when they talk about BFS. Why has my muscle atrophied in the twitching muscles ? Why have my other muscles atrophied conveniently at the same time as my ulnar nerve has effect my hands!

Soo Keen to but us in the bucket of ALS paranoid people. Yes I am paranoid now. But previously I have never had a care or stress in the world.
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Mike12345
Put us **
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