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In Remembrance
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Join Date: Aug 2006
Posts: 1,002
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In Remembrance
Join Date: Aug 2006
Posts: 1,002
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Cyn-Cyn
I agree with every thing you've posted here. I posted my "testing list" only because that's the topic here. And IF ONLY there WAS a BLOOD TEST that could say "positive - 80% neuro 20& vascular TOS 7 cm from the first rib!" Ha, ha, what a treat that would have been.
I just had my 5th set of EMGs / soma nerve testing. They are going to do my lower body & legs because my left foot is "dead gone" and my right is going, and the rheumy said it's "idopathic" - they can't explain it - BUT, he said, it's obviously got some connection to the TOS situation as my body circulation and systems are "blocked" like Cyndy was saying. This man runs the UCLA disability in patient program and pain control program. He is world renown.
So it gets confusing.
But I went almost TWO years with no testing, and despite my medical / legal knowledge, because my hand ortho specialist just kept saying "overuse" and nothing more, I took to the internet, found you guys, and we ALL chipped in to brainstorm "my" test list. (It's not mine!  )
Now I do notice some things about my surgery, so I'm going to post a new post.
Love to you guys, and I totally agree with Better that finding a TOP DOC for TOS is job #1. I think I did talk about that in my post. But for someone out there like me, who is a neurogenic TOSer with no visible / discernible compressions and with RSD and supposedly whole body fibromyalgia - or according to Dr. B an unnamed rheumatological disease overlay, I push forward for testing just trying to make sure we are not overlooking an identifiable condition that may be mimicing the TOS or is along with the TOS.
As far as legal stuff, when I heard that now we need those home or ability studies in addition to our doc's report - for a strong 100% case - I merely want to share that with everyone so that they can take it to their attorney or court and ask if it's appropriate for them also. I don't want anyone not to get the most fair outcome of any cases due to TOS.
But it also doesn't mean that my word is correct! I could be wrong. It takes guts, and frankly more energy than I have, to stick my neck out and share what I've "heard" via the grapevine because then I am a target for a shoot-down - but the point is that we are ALL a TOS family, and I hope you'll forgive me if I ever have a wrong opinion.
sorry to write so much, but I've been unable to talk / write without bad pain for many months now, so I'm enjoying coming out of this period!!!
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