For All The Newbies
 

There is some valuable notations here on the forum regarding testing...
We have all had some mof the tests and some of us cannot even get ok's to get them done.

After 7 years I'm still asking you~all questions on testing.
My thread on Vascular and arterial testing.
I take that information and suggest it to the treating MD's even though I'm post surgery 2002.

Finding a FAB TOS doc is essential.
I just founf mine after all these years.
The BEST thing I agree with Grom is the PT.
The Edgelow program has sure helped me.
You can order it without seeing Peter but its up to YOU as a patient to do it daily, 4-6 times a day whatever it takes.
It's not a cure but relief and strengthening when our bodies come crashing down.

Tamara has pointed out in her post thread on all the tests to have done to rule out and rule in TOS.

Informative, supportive, intelligent peeps here that have been through it all.
I don't know what I'd do if I had not found this forum.

And I have to think about all the thousands who have TOS and don't know about it.

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! :grouphug: )

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!!!

thanks Tam
 

Hi Tam,
glad to see you're able to type n share your info again missed having your insightful posts!:D

Love and hugs,
Victoria:hug:

I'd like to add a test that they should come up with-

a test for pain levels!
that will be proof of the pain that is caused by the "invisible" injuries.

now that would be a big plus.
for so many conditions.