Hello Everyone. I just found your group. I started going through
posts, but I am in to much pain to find my answers. So, I am sorry if
I am asking questions that are already answered somewhere. I have a
long list of medical conditions. Klippel Fiel Syndrome (thoracic
spine is crushed and fused, Sprengels deformity (something to do with
ribs and other deformities on my left side, scoliosis. I was also
diagnosed with a DVT in my left jugular vein, signoid sinus and
another vein over 9 years ago. They have put me on long term Lovenox
injections which cause me a lot of joint pain. There was never any
discussion to go in to unblock it.

The past years have been horrible. I have been having severe
throbbing in my left arm and the last 3 fingers. I get a burning
sharp pain under my arm pit and lower inner arm. I having numbness,
tingling in my arm and fingers. Chest pressure. The numbness is
slowly moving into my jaw and now up my face on the left hand side.
My head falls asleep on the left side. Those are just a few symptoms
that I can think of. I can only sleep in about 2 positions.

I have been to every doctor imaginable. Vascular, neurological,
internal medicine, Auto immune disorders, Autonomic dysfunction's
etc..........I have had MRI's, MRA's (vascular MRI), Nerve conduction
test and emg? Many Doppler's looking for more blood clots because of
the sever throbbing and burning sensation. The only thing that shows
on a Doppler is that when I am lying down, the blood flow in my lower
jugular vein takes a lot of time to fill when compressed. But when
sitting up, the flow is faster. Every test (other than the left
jugular vein being blocked) has been normal.

At this point, my doctor is treating me as if I am a hypochondriac.
My big questions is, is it possible to have TOS even if all your
tests are normal? Do some DR's not believe in it? Or is it likely
that my Dr.'s know about it but do not think I have it?

I am so sorry for typing so much. Any help would be greatly
appreciated.

Thank you!
Jill from Pittsburgh, PA