I'm not talking about people you've talked to, or met, through the Internet, just in everyday life.

I've had TOS for more than 30 years now and I haven't met anyone. Not one single person. No one I know has heard of anyone either. Except, my wife had a coworker whose mother has it, but I've never met her. That's it. That's the only person I've ever heard of.

I guess I'm just wondering how common TOS is?

i feel it is very rare too.

6 - two I met as I knew they had TOS. The other 4 were random.

I have never met anyone with TOS before. Never heard of it until I was diagnosed.

I have a business partner who is remote from me. We work from our respective homes. I was describing TOS to her which resulted in the discovery that she has TOS.

But I agree that it is fairly rare. Ancestors with a predisposition for compressed neuro-vascular structures probably did not fare well.

Although I agree with Stoxen that it is also underdiagnosed in modern society. For example, my biz partner didn't even know she had it. When I went to the ER they didn't suggest or mention it.

Never met anyone with TOS, and i had never heard of it until i stumbled upon it online.

Oops! Make it 7. I forgot about the 15 year old swimmer, bilateral blood clot, venous TOS girl whose father I met the other day. She opted to stop swimming and keep her ribs.

When someone has blood clots and chooses to keep the first ribs, what kind of precautions, care and meds do they use afterwards to avoid a repeat?

At the doctor's offices, I ask if anyone has hand or pain up the arm, and sure enough, there are several there at the ortho hand, or pain management who I suggest the rule out TOS - but by that point I know it.

Never do their doctors say it, so I have to be so careful on how I say I have it, etc.

But they always start out with "the pain is killing me but they can't find out what it is, but I work 80 hours a week on the computer, etc.

I think there are many more who have it but the docs just don't know. Even from when I got this in 2002 by computer, NINDS and CDC changed their wordings on it, but they are still PRO BUSINESS, and this is a very much PRO BUSINESS atmosphere with doctors. So many unscrupoulos doctors with fight you (having not even seen you) by URs, and my attorney after a year full of them just said, "this is my treatment plan, it hasn't changed, she's gotten worse, etc."

I am a fighter by nature and I am not faking this - not one bit.

God bless you pray to his white light and angels to stand around you and protect you, bring down your pain, direct you to good docs, etc.

But NO, except for TOS here, and my parties they used to come to, I have NEVER MET ANYONE WHO KNEW THEY HAD TOS.

I think some of my coworkers had it or some version of it.
2 of my long time co workers mentioned some chronic hand/arm shoulder pain in the past - they both eventually became supervisors, so their production work was limited, so they had more movement options - but they still had to use computers at times.

And at the same time of my last injury about 4 others were having various RSI or shoulder injuries & some had surgeries for those - but still sx/pain after a normal recovery.

I mentioned TOS to them and told them to look up the symptoms online, to see it any of it fit for them. But I was off work again before hearing anything.