struggle to get an "official" diagnosis
 

I gather this will be a familiar story to many; I'll give some background (maybe more than you need!) and then at the end I have a question about how I can move forward and start getting some real help / treatment for my now-chronic pain.

I have been having problems with my right arm for the last three years, following an injury I sustained to my neck (lower cervical vertebrae) and elbow. My symptoms include hand weakness and clumsiness, shooting/shocking elbow pain, shooting pain/tingling in fourth and fifth fingers, lower arm pain/weakness, whole arm numbness (particularly at night), coldness in hand, and pain / muscle spasms near my shoulder blade. I saw a PT for several months following the injury and I was able to manage my symptoms for about two years, with just minor flare-ups. Last summer, however, it starting getting worse (no trauma, just gradual worsening) to the point where I am now having trouble functioning in my daily life (dropping things, unable to lift my arms, difficulty with fine-motor activities). NSAIDs and muscle relaxants have little or no effect on the pain. I am fairly young (under 40) and otherwise healthy and active.

I have an HMO. My primary care physician had me see a PT for several weeks (suspected cubital tunnel), but that was not helping at all so he referred me to an orthopedic surgeon with a specialty in elbow injuries. The ortho did xrays, EMG/NCT, and an MRI (elbow only), which turned up nothing unusual ("just" some muscle and tendon degeneration). He now wants to refer me to a neurologist so they can look more closely at my spine. The vibe I've been getting from him is that he doesn't believe me; at my last visit he basically told me if I "stretched more" my pain would go away.

When I stumbled on the Washington University TOS site last weekend, it was like a revelation: There is actually a condition that accounts for ALL of my symptoms (and my negative test results), and there are treatments for it. (And wow, there is a whole forum here with people who have it!) But from what I gather from this forum, many doctors don't know about TOS and have a hard time "believing" in it; when I brought up TOS to the ortho he said, "oh, that's caused by having an extra rib," did the Adson maneuver (which has been proven to have no clinical value), and was dismissive of the whole idea.

So my question is this: Do I bother going through with all of these specialist visits, tests, etc. and eventually (hopefully) getting an official TOS diagnosis, or should I try to find a PT and / or chiro with relevant (and successful) experience treating TOS and pay for it on my own? And if the former, is there a way I can be a better advocate for myself and direct the conversation toward TOS without being seen as a problem patient? I am really at my wit's end and for sanity's sake don't want to have to wait another three to six months to actually start a treatment plan!

Same story as so many before...

Explore our sticky threads and learn as much as you can..

I had the bes results when I found a very good chiro that did a mix of therapies as well as adjusting..ultrasound, low level laser, IF stim, Nimmo/trigger point...
A very good PT would be helpful too.
But if any time in your life you had falls , car accidents/whiplash , sports injuries.. something that might have caused misalignments then chiro is a good start.

Thanks for your reply, Jo*mar -- it is good to know I'm not alone!

Question for you (and others who reply): How did you find your chiro? And did you go to them with a TOS diagnosis already? If not, what type of doctor did finally diagnose you?