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shedwater

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I've just been tentatively diagnosed with PMA after 16 months of slowly weakening of the muscles of the trunk of my body (neck, upper back and shoulder blades, waist and upper legs). My upper back has atrophied, and I walk slowly, stooped over with my head hanging forward. A blood DNA test and a muscle biopsy both are "consistent with" PMA, whatever that means. My question for this forum is, does anyone ever have PMA with no fasciculations whatsoever or muscle cramps? I seem fairly stable, with maybe some progression in the legs. The lack of twitching makes me suspect that maybe my neurologist was wrong. Has anyone been definitely diagnosed with PMA without any twitching?
 

hopingforthebest

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Pma

My husband has recently received the PMA diagnosis.

I just wanted to respond to you, just in case you don't receive responses on this PMA site. Seems that more communication on the ALS/MND forum.

My husband actually had alot of muscle cramping and doctor pointed out the twitching to him that was on the surface of his legs, etc. but doesn't seem to bother him. He does get charlie horses now and then and they are uncomfortable.

Any way, wish you luck and blessings. The doctor at ALS clinic tells us that PMA is much slower progression than regular ALS, but assures us that still ALS.

It would be wonderful if yours is not.

We went to two large university hospitals and had testing all over and both came up with his having PMA. His is all above waist. Arms hang, neck hangs. He tries to hold neck up when out but complains of neck being tired. Legs still very strong, thank God.

Again, good luck. By the way, my husband is 58. I am so saddened by the younger ages of PMA/ and ALS patients.

Praying for a cure!
Patty
 

Bobby C

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I have been diagnosed with PMA with these symptoms: Severe weakness in left leg, some weakness in right leg, almost complete loss of balance and muscle twitching. (I have trouble spelling the technical name.) Since taking Rilutek (now two months +), viitamen E and Melatonin, it seems that the twitching has subsided. I am sure it is not as intense now, but I may be getting used to it, like some other things we I have become accustomed to, ie. ringing in my ears until I got hearing aids.

I hope this helps. Good luck and best wishes.
 

juliesmile

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I don't know the answer to your question techinically. My husband didn't think he had twitching or fasiculations until I laid next to him one night and I could feel all these little bursts going off all up and down his legs. Later I pointed it out to him and he just thought everyone did that, the same with the cramping. Twitching and fasiculations are a result of the nerves dying and sending incomplete messages to the muscles they are suppose to be working. It seems to me you would need to be experiencing some sort of symptom. Do you have atrophy or just weakness? Another important distinction.

My husband diagnosed in March with PMA. Began with limping in left leg, by the time we were a couple sessions to neuro he had visible atrophy. Wear's a brace and gets along pretty well.

I hope this helps. Also check out Myasynthis Gravis. It has some of the symptoms you have.

Take Care,
julie
 

shedwater

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Neurologist calls lack of fasciculations "unusual".

Thanks for all the input. Since I first posted, I have seen my neurologist only once, and I asked him if anyone ever had PMA with no muscle twitching at all. He simply said it would be unusual. He still suspects PMA, and he hasn't mentioned Myasynthis Gravis. He has referred me to another neurologist who specializes in motor neuron diseases, but I'm still waiting on that appointment.

I'm a 51 year old male and out of work because of this disease. I tire so easily I have to lie down every 20 or 30 minutes. The only noticeable muscle atrophy is in the upper back, yet walking is difficult for me. My legs look normal, though. When I lie in bed and get quiet, I sometimes notice faint muscle quivering in different places, especially the legs, but it is so faint and never lasts, I suspect I am just talking myself into believing they are symptoms. My neurologist has found no twitching at all.

I can't hold my head up without a neck brace. The really odd thing is that I have a large fatty tumor at the base of the back of my neck. I noticed it 2 years before my trouble began, when it was only half as large as it is now. It's centered over the exact spot in my neck where the weakness began, and now I'm weak in the entire upper back, shoulders, waist, and upper legs. An MRI shows it's just a coincidence; it's just in the skin. Four doctors have told me it wouldn't help to remove it.

Ignorant me, I just fgure if something's too much of a coincidence, it probably isn't a coincidence.
 

CindyM

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HUmm. I wonder if it is time for a second opinion? That sounds like a big concidence to me, too.
 

mamaoftwo

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Can there be atrophy with MG?
 

shedwater

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Weakness, not atrophy with Myasynthis Gravis

Just from my own reading, muscle atrophy does not seem to be typical of Myasynthis Gravis, but unusual muscle fatigue and weakness are. My own uninformed opinion would be that if someone with MG didn't put out the extra effort to use the affected muscles, atrophy could result. I haven't looked into it much, since my neurologist has not pointed my attention in that direction, and the most common symptoms don't sound like me, anyway.
 
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