Hi Rachelle --

Gosh, I'd give anything to find a doctor who believes me when I say IT'S ALL RELATED TO TOS. I am a firm believer that every problem I have in my body is all because of TOS. And I'm sick of nobody connecting the dots. Even my dream doctor who 100% believes in me has a hard time completely connecting the dots. It is hysterical.

I'm your age - 30. I've had this since I was 19. Both sides affected.
I experience dizziness, lightheadedness, nausea, crap stuck in my throat, hard to swallow, post-nasal drip, weird tremor-like things, etc. I'm constantly sick. My arms don't work. I get asthma when I'm sick because nothing drains. My ribs pop into my lungs all the time so I can't breathe... Need I go on?

Of course we all have heart problems... I don't know about you, but my coratid artery is about 85% blocked, and all the little baby branches are working overtime to try to pump blood into my head. And then when it tries to go back down, of course, it all gets stuck in the outlet area and has to find a way to squeeze back down... Along with lymph getting stuck... I hate lymph.

Let's think about this, people... The MAIN HIGHWAY to get blood from our heart to our brain and back is BLOCKED. Nobody is going to convince me that we don't have "heart problems" from that. Has anyone checked our blood pressure lately? I don't know about you guys, but I'm always half dead. My heart may not be directly involved, but it certainly has some problems.

In case we all haven't noticed, we're all a bunch of hypochondriacs, and rightfully so, because SO MUCH FREAKISHLY WEIRD STUFF HAPPENS TO US. (Don't take the hypochrondraic thing the wrong way - read on. I, for one, am a very proud and self-declared hypochrondriac.) The new diagnostic measure for TOS should be -- "Patient presents with A, B, C, D, E, F, G, H, I, J, K, L, M, N, O, P... symptoms, none of which can be explained by any sort of normal means; therefore, they must have TOS."

After my very terrifying injury last year, when all I was doing was playing the clarinet, for God's sake... When I ended up in the emergency room from that, with a neck and throat problem that no doctor could explain, including an ENT who scoped my throat, and a throat problem that I STILL haven't recovered from because nobody can figure it out... I adopted this new attitude about this stupid, stupid condition, and it goes something like this:

"HA! Look what TOS did to me now!"

And every time something new happens, I no longer freak out or worry... It's just TOS. And I'm going to take a muscle relaxant and survive. And for no reason whatsoever, three days from now I'll be living in a totally different body. And a few days after that, I'll be living in a totally different body again... And a few days after that, again, a totally different body... And it's such a treat, really, because you never know what you're gonna get.

Every time I choke on food I'm trying to swallow... Here we go again.
Every time I stand up and start walking crooked... Here we go again.
How about the time I stood up and went completey BLIND in one eye... Yup, that was TOS again. (Ocular Migraine - who knew?)

Anyway, horrific things keep happening, and we usually just have to accept them. I think maybe that's what happens when you hit the 10 year mark. Anyone else feel that way?

~ Jenny