Old 05-07-2008, 01:56 AM #1 (permalink)
curedmaybe
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Default increased repetitive potentials/ALS?

Hi--
I have been diagnosed with NASH (non-alcoholic steatohepatitis) as well as polyendocrine dysfunction and an undetermined autoimmune disease that is sjogrens like and lupus like, and have severe spinal degeneration, osteophytes, canal stenosis, herniated disks and scoliosis throughout the spine. I have also had a history of very stiff muscles that are continually contracted and increased repetitive potentials on my EMG. I was thrown out of a neurologists office because he said that I would have to be very ill to have such a bad EMG--tones of huge spikes that just wouldn't stop, though they decrese in intensity, giving the surface EMG a purring sound.

I just figured that doc was a kook and then about a year later, I became very ill, have lost pigment and have hyperpigment, my whole back was suddenly bad, my muscles still tight, and my liver got bad.

I went to Mayo to have all this sorted out and try to prevent further crippling and disfigurement and get a good diagnosis. The rheumie there said "oh, you have fibro!" like Duh! I've had two neck surgeries and need another and am in tremendous pain now. He also noticed how hard my arms were as well as tender and that my fingers appear to have had the tissue on the little fingers turn hard. He talked to me about connective tissue disease.

I bring up ALS because it was one of the post surgical diagnoses by neurosurgeon gave me. I didn't know what it even was till a week ago.

I have had a needle emg and nerve conduction at Mayo on my arm and shoulder, which is really bad now, I thought from my neck getting worse. The EMG showed the usual results for me, nerves that fire strongly and continue to fire even though the muscle has responded. Moving my fingers elicited such a strong response that I had to move them very very little when asked. The EMG seemed pretty abnormal, like it was before, except for one spot. Though the ortho ordered it, the rheumie is getting the results. I'm still in alot of pain a week later from it.

My questions are:
With als, will a person have exaggerated nerve response and repetitive nerve response, increased repetitive potentials? Is it a nerve or muscle disease? It seems my muscles, from being constantly contracted, just don't even relax and that my nerves are firing all the time. This can't be good.

Also is ALS linked with any of the problems listed above?

And can ALS be something a neurosurgeon could diagnose post surgically as a finding during surgery?

If my nerve/muscle responses seem appropriate for ALS, what other tests can they do? I know they tested me for myasthenia gravis and I think there is bloodwork for some of the other diseases, though it seems many of them are marked by less nerve function rather than this exaggerated nerve function.

Is ALS related to polymyositis or misdiagnosed as polymyositis? Where can I get more info about symptoms?

Sorry to be so needy. I'm beginning to be scared now about the changes in my fingers and the rapid worsening of my back and current constant and changable muscle pain. I'm afraid my muscles are atrophying.

Any help would be much appreciated. Thanks in advance for the site and your kind replies.
 
Old 05-07-2008, 02:53 PM #2 (permalink)
wright
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Hello Curedmaybe

It sounds as if the problems with your muscles stem from the problems you are having with your spine. Osteophytes, herniated disks, spinal stenosis are all things that can cause all kinds of problems with peripheral nerves and muscles.
I'm not sure of the terminilogy that you are using with your EMG, so I can't comment on them. Typically what's talked about with EMG's is acute, ongoing denervation, which is indicated by fibs and PSW's and chronic denervation, which is indicated by large MUP's.
I or no one else on here can diagnose you with anything (your neuro will have to do that), but it sounds as if your problems are most likely not due to ALS.
 
Old 05-07-2008, 05:26 PM #3 (permalink)
curedmaybe
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I guess the equivalent description would be Complex Repetitive Discharges.

I'm still wondering if a neurosurgeon could come up with an ALS diagnosis from the surgery he did on my neck ( a foramenotomy).

Is there a biopsy that is done to diagnose this disease? Can you point me to diagnosis info?

Thanks for any help you can give. There isn't much diagnosis info I see outside of an EMG which can have up 40% inaccuracy. Is there additional stuff they do?
 
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als?, autoimmune, back, diagnosis, emg, fingers, good, info, lost, muscle pain, neck, pain, questions, scared, shoulder, surgery, symptoms, tests


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