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.

they mention autoimmune disorders so i thought id mention ehlers danlos syndrome (aka hypermobile) sometimes presents itself as being an autoimmune disorder even tho i guess technically it's not.

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.

Capricorn1,
are they having you do standard cookie cutter PT plans & strengthening before the symptoms are resolved???

Have you tried other PT places that might have more advanced therapists?

They should not be trying to strengthen until symptoms are greatly reduced or resolved.

Do they do any passive modalities for you at all??
like ultrasound
IF stim or other electric stimulation ( low settings -nothing that makes your muscles tighten up, just a gentle buzzing that should feel good) low level laser is great for trigger points and specific spots of pain
massage
bio feedback
posture work

I have had acupunture, Peter Edgelow, regular PT, chiropractric, botox, and very few massage. Had lots of EMGs for diagnostic purposes that actually felt good when hitting the trigger points. I'm not sure what you mean by ultrasound, is that for treatment purposes? I have neurologic, venious, and vascular TOS, right side rib resection in 2009 with some relief of major symptoms. I did notice what started as a bright red mark on my neck (right side) that now looks like a bruise or hickey. It throbs a little, my face is pretty red, and major headache. My guess is that it is related to this latest round of PT. They sent me home on Wednesday to rest.I was hospitalized with a DVT in 2010, so now I am wondering if this is something that I need to consult a doctor about. Its not throbbing so much today but the purple mark is still there. I am supposed to go tomorrow again, but having serious doubts if I should. This is a workmans comp issue by the way.
What do you think my course of action should be? I really appreciate your help on this. I feel lost and confused.

Capricorn1,
I'll make a new thread about how my PT sessions went, I thought we had a thread about it from yrs ago, but haven't located it yet.

i swear by manual pt (where the the pt feels for adhesions etc) especially if you have scar tissue

Tam,
My Neuro wanted to rule this out because so many symptoms can be similar. He was more concerned with optical myasthenia gravis. My eye has a droop and I had double vision one layer over the other, not side by side. There is a medication that is used. If you feel better then that is the diagx. I did not have relief so myasthenia gravis was ruled out. The minimal use of valium as a muscle relaxant relieved the symptoms, or managed them.
Hope you feel better.
di

TShadow

I pray you get some relief. You deserve it.

Take care, my friend.