NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - CRPS or TOS? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/55221-crps-tos.html)

Have you seen a Thoracic Outlet Specialist.

I am thinking this is what you may need to do. I saw numerous Drs. and didn't get a diagnoses of TOS from any of them. My Physical Therapist are the ones that diagnosed me and sent the info over to my PCP who in turn sent me to a Vascular Surgeon in Denver. There are several there. I see Dr. Sanders. My PCP said he had only had 1 patient with TOS in his 20+ years back when I was diagnosed as did my PA. It took us 3 years to get a diagnoses for me.

There are also a lot of Drs. that donot believe in TOS. I ran into several of them. Neurologist are the worst about not believing. If they can't see it on an EMG then they don't want to accept the diagnoses. Most of the time it doesn't show up on EMG's at all.

I think also they could answer your question on RSD too. TOS Specialist are pretty up on both.

I wanted to say also that there is possibly TOS specialist in your area. They are few and far between.

Ada

Hi Tracey,

A neuclear med test is a x-ray with radioactive material. It's done for cancer studies, heart studies, rsd, because the radioactive material shows up during the test and will show 'hot spots' like bone changes, tumors, condition of the heart and veins. A couple come and visit from Oregon, where we are from, he is in neu. med. dept. at hospital, and she is a conselor. They both have been so supportive. Take care, sorry for the late reply. loretta

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Hi everyone - im having some conflicting diagnosis from dr's over the last 3 years or so and the latest dr thinks i may have CRPS, not TOS. I have had a physio and pain cons tell me they feel i have TOS! A rheumy and a neuro guy not have a clue whats wrong and now a vascular surgeon confusing me with another syndrome!

My question for you guys is: do CRPS patients always have the burning hot sensations and the sensitivity to touch?

I have neither which is why im fairly confused with this latest 'shot in the dark' from this new dr.

A brief list of my symptoms are (all on the right side):

Coldness in hand - and on/off in shoulder blade and arm.
Little finger tremors and feels very alien to me - tip goes purple/tingles if too
much activity - swells a little, puffy looking.
shoulder blade pain
neck stiffness
numbness on front of wrist and forearm - also recently on side side of face, just next to my mouth.
neck feels weak - head feels heavy - arm feels weak and useless (on and off)
muscle wasteage in wrist, padded part of thumb and collar bone.
pain in collar bone and up into front of neck

Tracy-
I have CRPS in my arms from the shoulder down and I rarely have a burning pain. Usually a really uncomfortable sharp ache deep in my arms. And the sensitivity to touch is only when the pain is really bad. My arms do feel weak the more pain I endure and swelling is common as well as stiffness and temp changes.
I'm so sorry that you are not getting consistant reports from ur dr.s I know how frustrating that can be. I hope this site gives u hopefullness and gives u a will to get thru this like I know u can. it has for me.
God blessu all!
Sarah