Quote:
Originally Posted by momXseven
Well I see the eye Dr this afternoon, I'll post how that goes when I get back home.
I've been over at one of the fibro boards and most think my SX look more like lyme or MS than fibro, just like I thought.
I'm really POed at my neuro, turns out he did not test my CSF for all it should have been tested for OR he still has the other page/s of the report and is not telling me he has them. Plus the fact that he didn't draw blood at the same time.
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Good luck at the drs.
I hung out on a fibro board too when I was dx'd with that. And told them my hx, sx, etc. They (the fibro people) told me pretty much the same thing, that what I was saying really did not fit what they felt, what they lived with.
Not that I really feel too ms-y. It's weird for me, cuz I have the other stuff going on though. Hard to be sure what comes from where. Hard to keep track of the sx vs. disorders.
I finally told my neuro, maybe it's not ms, maybe just the neck and sm. But let's say it's NOT fibro. I'd rather be in denial on that one. He's cool with that if I am. And I am.
And the pain doc is cool with that too - he says if we can't trace some of the sx to my neck, they are quite likely from the syrinx. I'm glad he is open to that idea, because I was going crazy getting anyone to believe that thing was giving me trouble.
It was like having a ghost in the house - I know it's there, I know it's doing stuff. But bring it up and people think I'm crazy.
And you're right about the LP and the bloodwork. It should have been done at the same time. It is not done , always, though. I think the docs think the LP should show enough to dx or there won't be any need for the bloodwork. and that's not the way to think. If it was their wife in limbo, they'd be more thorough. Or if it were them.
