I've been looking through posts on tremors and found yours. I have severe vascular TOS on the left and neurogenic bilaterally. Although definitely present, I do not (yet?) experience nearly as much nerve pain and/or as many neurogenic symptoms as a lot of members of this forum. My arms always feel heavy and ache incessantly, and my left hand is numb and tingling 24/7. My right has it's moments. Baclofen seems to control the actual shoulder and neck pain, but if I forget it or run out, you better keep away!

The "real" reason I'm writing is because of the tremors that have started. My husband actually said something about it about a year ago. When I was kissing him goodbye one morning, he said that my lips quiver when I kiss now. I had started to notice that too. It also happens when I drink out of a glass, putting pressure on my lips. Then I started having muscle jerks, even in my legs, but mostly in my arms, and one time my head. You guys are right - that is SO embarassing. My kids think I'm doing it on purpose. I've actually thrown a pen in the process, screwed up my writing several times, and one time even spilled my drink down my front.

Most recently, my hands seem to be doing what my lips do. Whenever I try to use them to push something, open something, squeeze something, or otherwise apply pressure to them, they shake uncontrollably. I wasn't sure if this was TOS-related, but it seems you all hold the answer to that. Is the nerve damage reversible or will it just get worse? Will PT help - or will I have to have other procedures done to stop/ease it?

I've only just made it to one of very few docs in SoCal that will take TOS cases. He's starting me on PT, but he said it's only to please my insurance company (Aetna HMO) and eliminate any chance of them giving me more grief! He's 99% certain that PT will do nothing to keep me out of surgery (because I have no arterial or venous circulation when my arm is straight out and upward), but I'm hoping it does some good with the neurogenic issues.

Can TOS cause neurogenic symptoms in my legs too? They're very minor in comparison, but my left foot gets numb and tingles and I have tremors there sometimes too.

I wish we could all find a TOS God that knows 100% of everything about our condition - AND how to fix it!

Carrie
o2bponca