No, there are no Krispy Kreme donuts here. I'm referring to the appearance of your eyes in just a few minutes, if you hate reading medical crap the way I hate reading medical crap. If so, just move along, and I'll try to do better in a few days or so. If you stay, and your eyes glaze over . . . don't say I didn't warn you.
It's been about two weeks since my last new-rollogist appointment (it was the old new-rollogist; I went back to him after being so thoroughly turned off by Dr. Christmas, the one I saw on 12/22). There is no reeeeeal news. There's been a bit of a change in perspective and a possible lead in another direction.
What the neurologist said: He will no longer commit to any percentage of certainty that I don't have ALF. (He started out being 99% certain I don't.) He does continue to say that he doesn't believe I have it, though. He has done all the blood tests he knows to do. Actually, there was one he hadn't done, and I asked him for it, and he ordered it, just to humor me even though I could tell he doesn't think it will show anything. That one had to go all the way to California to be read, so it'll probably be a while before I hear anything. My symptoms continue to be consistent with a particular type of ALF that begins in the throat and tongue muscles. (I am deliberately not using medical terminology here because I am not ready to become a stop on the search terms for people researching that illness. When and if I can be of some actual help to such seekers, I will certainly do so, but I am not at that place now.) However, he says that IF I have it, I have a very slowly progressing case of it. So he asked the question again, that he asked, I think it was back in August: "Do you really want to know that you have an illness that you can't do anything about?" And I finally have an answer to that question.
He said that he can do a test called an EMG, during part of which he would put a small needle into my tongue and shock the muscles there. Their reaction would give him some information. Essentially, a "positive" on the EMG would be "confirming for ALF." However, a negative on the EMG would not rule out ALF. It is not that reliable, and it may simply mean there has not yet been enough muscle degeneration. So, in short, if I have the test, which he said will be very painful, I may learn that I have a nightmarish (paralysis, loss of speech and swallowing, eventual respiratory failure) terminal illness. Or, I may learn nothing at all. Just endure a painful test and still be left wondering. And, as he said, if I have it, I have a slowly progressing case of it. It is an illness that would become quite undeniable at some point, test or no test. I cannot imagine that knowing I have "it" could do anything but make me feel worse, less able to function than I do, than I am, right now. There is no point in seeking evidence, just to have a label to replace "WTF Disease." Remember, there is no treatment for ALF. So, no point. That's my (and Jif's) decision, at least for now.
POSSIBLE new direction: When I saw Dr. Christmas and he sent me for some bloodtests, I asked him if he would throw in "Vitamin D level" just as an aside, because back in the summer my internist discovered that it was very low. We regarded that news as incidental to everything else that is going on, but I did begin faithfully supplementing with the maximum recommended dosage of supplements, and I just wanted a re-check to see if I was within normal range yet. But guess what? Even after months of maximum supplementation, it's still deficient. This means something. I don't know WTF it means, but it means something. Next stop, an endocrinologist. Jif did a little online research and discovered that prolonged deficiency in Vitamin D can lead to neurological symptoms. Muscle weakness. This is just a tiny bit exciting. Because maybe it means that what looks like ALF symptoms could be the result of Vitamin D deprivation (this is what Jif and I are speculating/hoping; no medical types have said so yet). That doesn't solve the problem, because there is some reason that my body is not processing the massive amounts of D I've been feeding it for all these months. BUT, it may suggest a more manageable problem than ALF. I mean, cheez whiz, as far as I know or can imagine, any medical problem is a more manageable problem than ALF.
So. More blood drawn today. And an ultrasound of parts that an endocrinologist will be interested in -- thyroid, parathyroid. I'll keep you posted. (Oh, and for those of you who've followed this whole long, strange trip, the room-at-all-ogist did all the tests he could think of to do, and came up empty. But he was kind, and interested, and asked me to let him know WTF WTF is when I find out. Kind helps.)
There's more I want to say about all this, but I hate writing medical; so I'll do the rest another time. These are the highlights and lowlights right here, for right now.
As always, I thank you for your prayers. Maybe, maaaaybeeeeee we're getting somewhere. Maybe some answers -- hopeful answers -- are coming soon. So don't stop now. Or if you have stopped (and ohlord, I know it's been SUCH a long time), start again! Thank you and much love to you.
file under: &Partial Nudity &WTF Disease