Thoracic Outlet Syndrome Support Group

Ok, About 8 months ago I stated having some really weird symptoms of tingling in my arms and chest, a few months later came pain in my neck (right side) and tongue. It feels as if I am being stabbed under my chin straight up thru the back of my tongue). I brough all this up to my Dr and she thought maybe it could be stress(HUH???)
In May my vision in my right eye seemed off and my eye muscle was very tight and hurt (along with all the other symptoms). That lasted for 3 week when I had my first "attack" (for lack of a better word). I was eating lunch and all of a sudden I couldn't swallow. My tongue felt very tired and hurt (base of tongue), then suddenly my arms got very heavy and it was very difficult to move them. This lasted for 20 minutes after which the stabbing pain in my tongue increased 20 times and my neck and collar bones hurt for 2 days. I went to the Dr and she made me an appointment with a neurologist.
While waiting for my appointment with the neurologist I had several more "attacks", one leaving me in pain for 3 days, unable to eat and occassionally mispronouncing my words. My hands have sense felt very tired and "weird" (like they don't work right) and my arms swell and at times hurt or get very very tired (sometimes one sided). The pain in my collar bones, neck and head are still a constant reminder that I don't feel well, and I have been getting very dizzy and having migraines (I had previously never had one) I saw the neurologist and he told me it was anxiety, which I am not buying...he didn't even look at me.
I am frustrated and tired of not feeling well. My Dr. doesn't know what is wrong with me but I still hurt every day and on really bad days have these "attacks" where my symptoms get 20 times worse and always leaves me with the same horrible neck pain and tongue pain for days.
So my question is.....could this be TOS??? In TOS can you have these sort of "attacks" where the symptoms peak and get worse and then gradually get a little better? Is there anything I can do for the pain? My Dr. wants me to see a cardiologist because of the constant neck, collar bone, throat and chest pain I get, but I don't think it is my heart. My Dr. has never even heard of TOS and so far I can't find anyone in Iowa who has treated anyone or diagnosed anyone with TOS. Please let me know. Any help would be appreciated.
P.S. My left hand is commonly white, while my right one is commonly a red color. This occurs when my hands are normally down...typing, reading, writing, sitting with hands on lap. Is that related to TOS??
Posted on 09/17/09, 01:09 am