Hi all,

My name is Connie and I am beyond convinced that I have TOS. Here is a brief history followed by my current issues.

Fybromialgia
Chiari Malformation - decompression surgery in 2000
Arthritis in hands and c-spine

Doctors, including my nsg said my problems would go away if I lost weight, so I lost 100lbs. Seemed to come off real easy once I went off Amitriptyline. I thought this is great! I started hiking and figured I'd at least be better. Not so much...

Shoulder / neck pain is worse, suboccipital head pain, wasting muscles in my upper arms and here's the newest stuff:

Raynauds - diagnosed by me, confirmed by 2 doctors.
Next, more weakness in arms and hands.
Then, ulnar pain. NSG test only elbows down to hands. He says I have ulnar neuropothy and to let him know when I wanted a surgical consult. I'm like, "wait, what about my neck, shoulders... could the pain be coming from there?" He says no, that's just arthritis get use to it.

Final blow, a few weeks ago I started getting chest pressure. It would get tight and sometimes tighten up both sides of my neck to my jaw. Long story short on that, had all the heart tests including angiogram that turned into a Pseudoaneurysm!

Today the chest pressure is worse (never went away) and now feels like I need to gasp for a deep breath every now and then. Doctor tells me last week to go back to the nsg and that he thinks I have a muscle disease.

Seems to me after much research and reading that it's pointing to TOS. Bi-lateral and worse on left side.

Don't know if it can be connected but I also have tinnitus and raspy vocal cords.

So there ya go, what do you guys think? Any suggestions on talking with my nsg?

Thanks bunches,
Connie