Quote:
Originally Posted by tshadow
I would like to know if anyone has checked out myasthenia gravis. The more I read about it, the more it explains my "whole body" symptoms. Of course, I have to fight for pain meds.
I am finding that doctors are ridiculously closing their eyes to our situation, and our pain. IF you have any trouble breathing, this is a myesthenia gravis crisis symptom. It means our sympathetic system for breathing is not working. So you really need an advocate with you.
And with TOS and MG, there is no such thing as "muscle strengthening" for us. Gentle walk. No work strengthening, or you're going to make yourself have some bad symptoms.
If you can strengthen with no rebound, you might have something different from neurogenic TOS.
The sad thing is that we are so unique, that we have to do our own research, and keep fighting.
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I've never heard of it but will look it up, it may explain a lot. I agree with you we have to advocate for ourselves. I have found that "muscle strengthening" does not work for me and makes my symptoms even worst. Do you have any references on this that I can document for my doctors? One has me in a program and things just keep getting worst. The line is "since you don't use your arms we need to work them and put them into condition, everyone that has an injury tends to baby it." I really need to make them understand that my symptoms are real and I am not babying my arms! I get double vision, migraines, swollen hands, numbness, tingling, both arms fall sleep, ect.