Hi Carrie,

Sorry to hear you are suffering so much with TOS and myoclonus and peripheral nerve problems. I know how hard the struggle is with TOS even to just get a diagnosis and I hope you have gotten somewhere with your diagnosis of your myoclonus and nerve damage since your last post. My name is Christina and I also have vascular TOS bilateral (had DVT's bilaterally and had first rib resections in 2008...had complications with repeated clotting etc and left arm subclavian is still completely occluded with clot..had stents placed both sides but left stent failed due to new clotting etc so went home with collateral veins taking over and am ok but still have some pain and left arm is permanently damaged slightly swollen but I am thankful to my great surgeon that I still have both arms to lose since my other dr's refused to believe I had vascular TOS and waited too long refused to do surgery thus the permanent damage to veins..I am sure you know the story!)...I also developed myoclonus which sounds exactly like yours...first minor jerks..later symmetrical worsening severity etc...tried several medications...also have peripheral neuropathy (small fiber neuropathy & large fiber neuropathy) causing nerve damage & severe pain in my legs feet arms hands etc...also have hypothyroid with a thyroid nodule and have had several biopsies of the nodule but no surgery..yet...and believe it or not I am from Temecula but currently live in Utah....but we are moving back to Temecula/Murrieta as our parents are getting older and live there and we are tired of the snow and my body can't handle cold weather anymore...already moved one truck load there to Murrieta...we have our own business here and must decide what to do about my health insurance coverage first so it is a slow process..We are still trying to find the cause of my myoclonus, chorea, tremors, muscle spasms, migraines, fatigue, etc. and I have had tons of labs and MRI's..sounds like we really have a lot in common!.. I WOULD REALLY LOVED TO CHAT WITH YOU..I sent you my email & phone in a PM....I don't check this forumn very often so I will more likely get the message if you call or email....look forward to hearing from you..I recognize the rolling hills of Temecula in your photo Take care, Christina Hurt