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In Need Of Advice


karakal
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I just got a diagnose of myofascial pain syndrome in addition to POTS , but after seeing a PT it seems like the diagnose doesn't cover all of the symptoms - mainly because of spasticity.

I was wonder if anyone here suffer from muscle weakness in the legs [i walk with crutches], pain - mostly at the calf, difficulty keeping the body and neck upright, numbness of the feet and stiffness. All in addition to POTS.

It doesn't seem to be Chiari, Myasthenia gravis or Lupus. I had a brain MRI 10 months ago and there was no evidence of MS and my EMG came normal.

If you have experience anything like that - I will be very thankful to hear what it might be - In the mean time it becomes harder for me to walk and do daily activities.

It seems like the doctors that I see getting a very hard time to separate which symptoms are POTS related and which are something else.

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I just got a diagnose of myofascial pain syndrome in addition to POTS , but after seeing a PT it seems like the diagnose doesn't cover all of the symptoms - mainly because of spasticity.

I was wonder if anyone here suffer from muscle weakness in the legs [i walk with crutches], pain - mostly at the calf, difficulty keeping the body and neck upright, numbness of the feet and stiffness. All in addition to POTS.

It doesn't seem to be Chiari, Myasthenia gravis or Lupus. I had a brain MRI 10 months ago and there was no evidence of MS and my EMG came normal.

If you have experience anything like that - I will be very thankful to hear what it might be - In the mean time it becomes harder for me to walk and do daily activities.

It seems like the doctors that I see getting a very hard time to separate which symptoms are POTS related and which are something else.

Karakai-

What you describe sounds very much like something I have read about. I am wracking my brain trying to remember WHAT it is called. Give me some time. I will do some research & come up with it. Your symptoms don't ALL sound autonomic. I agree- something else is going on.

Julie

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I searched a few resources and suddenly remembered where I had heard of something that fits your symptoms. A woman posted a question here about a disease I had never heard of about a month ago (???) She may have been asking for her daughter. The doctor suspected "?" (can't remember the durned name!!!! :() and she was trying to figure out if there were other sufferers here. As I recall, there were NO (or very few) replies.

I'll try to do a search to see if I can find it....sorry I'm not more help.

Julie

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Hi, I had all the same testing, to rule out MS and such. My emg was normal too. After the positive Tilt Table, which I assume you had and after the neurologist did the emg, I knew enough to ask about small fiber neuropathy. Another neurologist did a skin biopsy and sure enough I had small fiber neuropathy. See if you can find someone in your area that does this testing because along with it they should do a bunch of other tests to see if they can figure out what is causing in it. Dr. Levine at phoenix neurology is the arizona doctor for this. You can go to their web page and read up on a bunch of disorders associated with it. Maybe you will recognize your symptoms.

Also B1 deficiency's can be associated with these type of symptoms too! If you do a search for small fiber or autonomic neuropathy you can read those post too!

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i just had my 3rd ttt test and they suggested another eeg? the one of the brain...

I'm still having major brain fog since my bad fall on my head.

i walk with a crutch or walker, soon wheerchair. i have fibro, chronic fatigue, peripheral neuropathy, pots, those are the big ones as the brain is down. biospy showed fibro type results.( but i didn't like that doctor. he would't let me watch.)

bellamia~

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Hi Karakal,

What you describe does not sound quite like myofascial pain syndrome. How bad is your spasticity? I have problems with myofascial discomfort - the best way I can describe it is a tight pain verses sharp or achy pain. Nobody knows quite what it is... it is just blamed on the dysautonomia. I have had some success treating mine with alternative PT and kinesiotape. Have you tried any muscle relaxants? I wish that I had more to offer.

Hugs, Broken_Shell :(

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I searched & searched and can't find the post I was thinking of.....Grrrrrr :( I did a little research & come across this. It may or may not pertain to you. Keep in mind that symptoms have varying degrees of severity and progression. No two people are alike in how they present or progress.

http://www.mayoclinic.com/health/shy-drager-syndrome/DS00989

All the best-

Julie

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