[tshadow]

This week I have been suffering more than usual in the form of severe stiff and painful neck with pain along the back few inches of my skull.

It feels like my head is actually swelling, and a feeling like something inside may burst.

I don't want to go to ER - I find it to be an added problem rather than help.

But, I do watch Mystery Diagnosis and I am surprised to find similar symptoms with a VAST variety of causes. One case that seemed identical to TOS turned out to be calcified lymph nodes located in the thoracic back. A thoracic CT showed the problem.

Another case, with the pain and numbness in hands, high pain and head aches, turned out to be "cavernous angioma" which is where small blood vessels burst. This was diagnosed by Dr. Andre Metzger of the Southwest Neurosurgeon Association in Phoenix, AZ.

Another similar case turned out to be a rheumatological disease of the discs which would ultimately cause freezing of joints (not a symptom of TOS actually) and that was diagnosed by Dr. Steven Magid, rheumatologist in New York City.

I still feel, but have no evidence, that I have TOS along with a rheuma / immunological disease process, as the swelling and intermittent all-over HIGH pain does not jive perfectly with TOS. Yes, it could be RSD or fibromyalgia caused, but I still wonder if someday, some astute doctor will actually look at my CTs, MRIs and / or do some testing that will show an additional illness.

God bless, feel free to comment.

[Jomar]

What about making up a concise list of your symptoms, history, diagnoses {so far} and treatments that you have had so far.

Then send copies of it to the show, each of the doctors on it and ask them if they would be interested in helping you find the answer/answers to your conditions.
Call, email, fax it whatever it takes.
One may just be intrigued enough to ask for more info and study it further.

[tshadow]

Also, just as an FYI, I have seen now 30 doctors, (most referred by my primary neuro for consult only), considering my new doc in the desert. I am getting the imaging that has been done so far, (quite a bit actually), gathered up for this new doc to HOPEFULLY take a CLOSE look at...

But I'll never forget Dr. Brantigan's advice to me, that there are hundreds of rheumatological and immunological disease processes that have not yet been identified, nor have any tests progressed to be able to identify them, nor are their symptoms regular enough that the doctors can prepare a clinical diagnosis. He felt strongly that I had one of those "invisible" disease processes along with the TOS, and that it would impede my health plan.

So while I do not give up hope, it also is somewhat comforting to have a logical reason for some of the weird body reactions I experience. I still think my main issues are neuro TOS first - that is where my pain primarily emanates - and also RSD.

(To newcomers, this is after five years of going through all of the testing and symptom analysis and surgery that I describe on my "TESTING" posts that I post regularly. If you want a copy of the "TESTING" post, please PM me.)