Monday, June 22, 2009


Rheumatologist #1 mentioned last week that he thought IVIG would help with my immune system/energies. I wasn't considering treatment--I was just considering whether I had it, as it does need to come into medical decisions. I forgot to mention I'll probably have to go back to him because of insurance until there's employment (important lesson: generally never burn bridges, and I didn't). Maybe it's an oversight, but my insurance doesn't cover for IVIG for Guillain Barre, even though the insurance health info site says that's the primary treatment. Regardless, it's not standard or covered by any insurance unless diagnosed in the first two weeks except for general severe immunodeficiencies (which given the list under my celiac post, well...).

He called in reply to that email and said that he thinks I have a chronic form of Guillain Barre (it has a complicated name) and that I should consider IVIG and it might help with a lot. Okay. Maybe. Can't really afford a lot of copays now. Maybe later or if I get that sick again. I'd say I don't have the chronic form but I was sick with 102 fever over the weekend and almost resorted to crawling to the bathroom while the family was away. And there was the usual dysautonomia.

I don't know what I think. But it's been eighteen months, no need to make a rapid decision.

Part of me feels suspicious about all this but he has more than enough business, truly, enough to keep a few more rheumatologists busy. But why bother now? Because of my internist chiding me, I have this fear that I'll get in there and he'll say I have a mental disorder instead (well, paranoia is a mental disorder) and want to treat that.

I guess this explains all the dysautonomia and may play into the bladder dysfunction at the same time. That I could move the top half of my body the day of surgery but couldn't move it the day after or weeks after, that I couldn't use any muscles to roll myself to my side or pull up--that's the Miller Fisher variant. Didn't recognize it because my legs were okay though slow. Darn nurse charted me as okay in self-mobility even though she saw it and commented negatively on it.

All I can say is thank God I had the mild version. People (not family) would have just yelled at me to do more after spine surgery. If not for my husband, if I were single, I would have had to stay in rehab and I could just imagine them yelling at me for what was not in my control, for not trying harder. People have no idea how much I actually push (though my husband's taught me not to do it to the point of it backfiring--sometimes I'm stubborn anyway).

Rheumatologist #1 said he definitely wouldn't do Enbrel because of this since it's been known to cause it. And that kind of thing is why I brought it up--it affects my medical decisions and when it hasn't, sometimes I've run into problems.

I'd go back to Rheumatologist #2 and discuss--but $$$.

I want tomato. Tomato with eggplant. Tomato with okra. Okra bhindi (okay, okra is bhindi--the kind that's very soft with tomato and curried). Bhaigan bharta. Chopped tomato over (rice) pasta. Grilled tomato on grilled cheese sandwich (yes GF bread).

Update: Now I've pinpointed my distrust. It was the Enbrel carrot followed by no Enbrel last fall when my life changed in every way because of pain. If I have to go back to him I think we need to talk about that. Not that it's a good option, but at the time I felt it was.

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