Well, I am probably not going to be in the clinical trial. I am bummed. (I coulda been a Spartacus, instead of bummed, which is what I am.) It seems I am too well. I haven't heard the official "No thank you," but it doesn't look good. Pout.
I realize I should be happy I haven't been ill enough this past year, and I am glad, but I decided to give myself one night of pouting. I took to my bed and called up the Discovery Health channel. There it was, Mystery Diagnosis. I of course would have preferred Born Without a Face or Life With No Limbs or Who Needs Skin, but, hey, you work with what they give you.
There was this woman on Mystery Diagnosis who was just plodding from doctor to doctor. They all dismissed her, and I could have laid down cash that she had MS. But, even better! She had my old friend Myasthenia Gravis. Just like my brother!
(This is a family joke. My brother doesn't have Myasthenia Gravis. However, when we were young we watched something on public television about it. The next day, little 10 year old David told my mother she needed to get him to the hospital right now because he was sure he had Myasthenia Gravis. My parents disagreed. I think it was the way he kicked the ground vigorously while screaming that he had a muscular disease. For quite a few years, every time my parents noticed Dave had a lump or a hangnail, they would intone "or....is it....Myasthenia Gravis?")
So, not only am I well, I do not have Myasthenia Gravis. So the Discovery Channel again fulfills its mission in shifting our perspective.
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.
Posted by: Kathy | September 29, 2007 at 05:41 AM
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.
Posted by: ~~Silk | September 29, 2007 at 10:59 AM
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.
Posted by: Zayrina | September 29, 2007 at 11:35 AM
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.
Posted by: sue | September 29, 2007 at 11:55 AM
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.
Posted by: TheQueen | September 29, 2007 at 10:06 PM
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!
Posted by: Katie | September 30, 2007 at 03:11 PM
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.
Posted by: TheQueen | September 30, 2007 at 11:02 PM
Here's to you staying too well for experimental meds! (Also: Insert rant re FDA here)
Posted by: Vaguely Urban | October 02, 2007 at 09:24 PM
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.
Posted by: TheQueen | October 03, 2007 at 06:36 AM