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Kewanee

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Reason
CALS
Country
US
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New England
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Skowhegan
Work it's way towards your trunk? I've got non stop stomach abdominal and midriff spasms that won't quit unless I'm sleeping or maybe in certain positions.

I had an emg which the Doctor coldly barked at me was ALS. My reflexes were brisk.
Only my lower legs and lower arms showed increased activity of some sort. What ever they look for. He wouldn't listen to me about the years of other things I've been through with sensory neuropathy and stomach muscles that react to certain meds like pain killers and proton pump inhibitors, with spasms.

Or the fact that I have had parathesia's and cramping in my hands and feet for years and that years ago my torso pulled me into a fetal position a number of times upon wakening.

The MDA does not think it ALS but I was holding my own strengthwise. They had not received the emg report in it's entirety but for almost a year now no changes. I have dropped feet and unable to stand on toes or heels.

I did well until I got an attack of Polymyalgia Rheumatica and had to go on prednisone.
Then the weakness increased, although I'm still on my feet as much as I can be. Then the infused me with Reclast which means I must take calium.

Just wanted to know what you think.
 

RonJu99

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Sep 20, 2008
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12/2005
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Florida
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I'm not a medical professional but from what you describe it doesn't sound like MMN. Maybe you should go to John Hopkins or one of the top rated hospitals in your area to get a consult with someone that has dealt with many of these neuropathies. You may want them to send your blood work to Athena Diagnostics in Worcester, Massachusetts to do a profile on your auto-antibodies. They can eliminate a number of possibilities by doing this.
You never mention what work up you have had done besides EMG. Did you have a spinal tap to check protein levels; etc.? Brisk reflexes are usually not associated with MMN, it's usually just the opposite.

Ron
 

Kewanee

Active member
Joined
Jul 6, 2007
Messages
35
Reason
CALS
Country
US
State
New England
City
Skowhegan
I'm not a medical professional but from what you describe it doesn't sound like MMN. Maybe you should go to John Hopkins or one of the top rated hospitals in your area to get a consult with someone that has dealt with many of these neuropathies. You may want them to send your blood work to Athena Diagnostics in Worcester, Massachusetts to do a profile on your auto-antibodies. They can eliminate a number of possibilities by doing this.
You never mention what work up you have had done besides EMG. Did you have a spinal tap to check protein levels; etc.? Brisk reflexes are usually not associated with MMN, it's usually just the opposite.

Ron

Thank you for your response. My reflexes at knee started out brisk and then stopped and became more normal but lost in ankles altogether.
EMG and MRI was it so far. I'll keep in mind the places you mentioned.
 
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