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Comments

Kathy

Between the hours spent watching The Discovery Health Channel, plus ten + years of ER, I'm convinced I'm as good as most doctors at making a diagnosis.

~~Silk

Actually, I'm sort of glad you didn't get into the trial. It was a Phase III, right? If the people running the trial are ethical, you have to be very ill so they don't feel guilty about killing you, and every other treatment has to have failed, to justify Phase I or Phase III trials for serious conditions.

Now, if a Phase II comes along, jump on it! THAT's the one you'll want.

Zayrina

Yeah, you sick people don't know how lucky you are. You get all the breaks.

I recall when my friend Jammies was diagnosed with MS. She set me straight right away that she did not want fawning sympathy. She gets to blame things on her "fashionably spotted brain".

We are lucky, she is because her case seems mild at this point, and I am because I have a friend who wants me to make jokes about her illness (and who remains healthy).

May your wellness streak continue for a long time Queen.

sue

In our family it is the mythical "hemerotis scepticemia"... which I am probably spelling completely wrong. I thing at one point I found out at least part of this actually DOES exist, but this was what my husband always threw out at the kids.

TheQueen

Kathy - I think I heard once that doctors look at your symptoms, and diagnose A. Then they run tests, and usually its A. If it isn't, it's B. They run the tests for B and its B. This explains why doctors also seem so bored.
~Silk - Well, I guess. Still, they've stopped MS Phase III tests for ethical reasons. The Rebif test ended and it went on the market because it seemed to be so effective. Bah. I might still have a slim chance though. Evidently no one can read the dr's handwriting.
Zayrina - Thank you. I hope so too.
Sue - It sounds like an infected bruise. I remember once I had "pruritis edema" which pretty much means "retaining water," I think.

Katie

Isn't Myasthenia Gravis the one with the bulging eyes? Because that one is freaking creepy and I swear I had an elementary school teacher with that. I always thought she probably had some ability to see through walls and across miles of land with her gigantic eyes. I was afraid to do anything wrong if she was within a good mile of me.

Bummer about the clinical trials. Consider me in solidarity with you in the reject brain department. Best of luck figuring out the next steps!

TheQueen

Katie - Well, I was about to say "no, droopy eyelids and grossly swollen tongue." But then I looked it up in my visual guide to signs and sysmptoms - and you are right. Ptosis,aka bulgy eyes (and an excellent scrabble term.)

And good luck to you as you get your brain straightened out.

Vaguely Urban

Here's to you staying too well for experimental meds! (Also: Insert rant re FDA here)

TheQueen

Vaguely - Give me the FDA over Ralph Nader any day. Those Public Citizen people are as out of control as my in-laws. Everything has a side effect, they seem to only want drugs with none.

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