Hi!

I was diagnosed as having TOS when I was 18. The Neurologist who saw
me reckoned I'd had it all my life, it had just gotten lost amongst
my other joint problems that were being investigated.

During my childhood and teenage years it wasn't so bad really;
occasionally it would hurt and get bad, but not enough for me to
worry much.

In the last few years, though, it's gotten a lot worse. I also have
lax joints and my shoulders sub-luxate a lot, which causes tension
that sets of the TOS.

I'm now at the point where I can't brush my hair if it's wet, holding
my arms up that long hurts far too much.

I've recently changed GP, so when my notes arrive there, he's going
to send me to a Rheumatologist to be the centre point of
investigation for all of my joint problems, including getting
something done about my TOS.

One of the worst things I find about TOS is that no one knows what it
is, or understands how painful it can be.
Half the doctors I've seen haven't know what it is!
And if it sets off and my arm loses circulation, no first aider has
heard of it, so they can't do anything.

Though saying that, I don't really know much about it either, just
that I've got it, and what it does to me.
I don't really know what to do when it sets off badly and my arm goes
blue.
I tend to just leave it be and if it gets really bad (if the blueness
goes above my elbow, or if the shoulder sub-luxates) I'll go to
casualty and get them to strap it up and get the circulation going
again.

So anyway, that's me!

Nicola