I have been diagnosed with TOS by several therapists. Most likely neurogenic combined with some vascular. My neurologist doesn’t believe that this is the case, and has pretty much decided that it can’t be TOS because it’s so “seldom”. She shows no interest in doing the tests the other therapists have done. She had me do a CT angiogram which of course came back showing nothing.

When I raise my arms to a certain degrees I can seriously feel when the blood is cut off, and my hands loose their color a bit. When I lower my arms to a certain degree I can feel the blood rush in again and my hands look funny, I can’t explain what I mean. Not sure if I can post a pic here. Firs anyone else have this?

Same thing happens to me, but truthfully this happens to a lot of people without TOS too. It seems to slowly be getting better but my affected side would often be a lot colder and take longer to warm up etc. I never really had swelling or anything which is what would be really concerning.

Hi! So it’s not just me! My neurologist doesn’t seem to believe me. My arms get so exhausted when I use them, but surely that’s not odd if there is little blood in them? My hands get “blotchy” when I lower my arms, but also sometimes when I’m just sitting still or if I lay on my side. I don’t have any swelling either, so that is good. They did a CT with angiogram which shows absolutely nothing, so I wonder why I feel like the blood leaves my arms and hands? Kjetil Larsen did a Doppler on a vein in my neck, this shows that the blood flow is down to 50% in neutral position and down to 30% in a provocative (halstead) position. This didn’t show on CT though. My neurologist doesn’t believe him since he isn’t a doctor, but she won’t send me to someone else to check either. Guess I’m going to have to get a new neurologist..

Sounds like Vascular - arterial..
I have it mildly also, it got worse from years of assembly /repetitive work..
Might skip neuro drs and look for vascular drs if it is very bothersome for you & if you might consider surgery at some point.

Very few MDs are in the know about TOS... expert PTs , DCs or body worker types might be more helpful, unless you have high pain or severe symptoms..

hands up test for TOS - Google Search

Sounds like you ought to get a new neurologist or vascular like Jo said. Stay up on your work with Kjetil. His protocol has helped me tremendously so far.

Yes, I’m still going to see Kjetil and doing the excersises he recommends. Lately I’ve been having a feeling that my shoulder is being pulled downwards, hard to explain. Been having a lot more shoulder pain too. I’m on Lyrica 75 mg x3, so I’m not feeling all the pain, but starting to wonder if I should have an mri of my shoulder too.

This was a massive problem for me before surgery. It took me 6 years to get diagnosed. If you truly feel they are wrong.... keep going. It took me 33 doctors and $25k in debt. When I found the right Neuro, it took him 10 mins to see it. I went for a ARTERIAL ULTRASOUND.

Sorry I haven’t replied, haven’t been on here for a few months. Arterial ultrasound, will have to check that out. It drives me crazy that nobody seems to believe me.