Hi claire marie,

i have just pasted this in from my first thread (being diagnosed with TOS) as its a lot to retype!.

just over 3 years ago i was healthy and never had any probs with my arms....then i fell down the stairs and landed directly on my mid back and jolting my neck too.

about 6 months after this i developed pain in my right thumb - couple of months after this started, this nagging dull pain developed in my right shoulder blade....more symptoms slowly came after this (all on the right hand side) :

little finger is wobbly and feels like it doesnt belong to me - kinda numb feeling
fatigued arm - feeling heavy
coldness in shoulder blade and right hand - sometimes this can change to hot feeling, but more often cold!
some muscle wasteage in right hand
right hand changes in colour - nail beds can go really purple if i get a bit cold
neck is weak - feel like i cant support my head
cant look downwards for anylength of time as it hurts!
cant sit up unsupported for very long
right collar bone has protuded and feels very bony these days - it aches and pain shoots up towards my the front of my neck and jaw.

the list sometimes seems endless!

i left an office job because of the pain, im on my 3rd doctor now and have had x-rays, MRI's (with and without contrast), my pulse dimished on the adsons test, tender on lower C/upper T vertebrae, also doc pushed on something next to my windpipe which almost made me cry with pain!.

from what i've read i think i may have vascular form of TOS?....help please - im finding diagnosis very difficult!


i live in croydon (surrey) and was seeing a rheumatologist for a couple of years who completely disregarded my PT's diagnosis of TOS....i didnt really know enough about it then to argue with her!. The more i researched TOS, the more i realised it is likely that i have it. So i booked in a private consultation with a comp called London Pain Consultants...saw a pain consultant who has an interest and has treated TOS, he was good and also agreed its most likely TOS....he then referred me to Professor Carlestdt privately, who then took me on as an NHS patient.

That is who has referred me for the MRA that im having on friday!

Whats your story?
x