The kids and D are off with Grandbob, having a steak dinner to celebrate their first Ravens training camp. Apparently S got a load of autographs because where they made the kids stand, all you could see was the top of her head and this little arm sticking up with a football and a Sharpie. R had fun too, although his greatest accomplishment was spending a full 45 minutes on a lemon ice (the boy knows the meaning of the word "savor"). D had fun, and I admit, shortly after they left, I felt sorry that I didn't go with them. Ah, but I'm just kind of having one of those sorry-for-myself days. I'll try to get some photos of training camp posted if there are any.
The visit to Dr. Maragakis at Hopkins neurology did not involve any torture, I am happy to say. He is such a nice guy, it is hard to stay mad at him even for having a needle jabbed in your head. He reminds me of a handsomer, younger Mr. Rogers. Anyway, he still doesn't know what's wrong with me. He said a couple of times that I don't fit any pattern (could have told him that) and that he's glad I am slowly improving. He also (thank goodness) said he's not inclined to send me for another spinal tap or any other tests until after the baby is born. For the first time, he said that he wasn't completely ruling out that this could be some kind of immunological or other response to pregnancy (aHA!), so he, like the rest of us, wants to wait and see what happens when AJ arrives. One thing he did do is send off some blood, to test it for -- get this -- "Stiff Person's Syndrome", which is apparently a real disorder, and also to send some to the Mayo Clinic for some hifalutin (the phlebotomist's word) autoimmune periplastic panel of tests. I guess they're still thinking that my immune system seems to be attacking the nerves. Dr. M said that there are a couple of other diagnoses that he's still got in the back of his mind, including MS and something I didn't catch starting with a D. Anyway, he says we should wait til the new year and he'll see me again and then we can start to decide whether to get more aggressive with the testing. I am not sorry to wait 5 months to see him again.
The kids were angels at Hopkins, by the way. When D called from the road on the way from training camp, he said that he foresees a disastrous dinner, because they're both whupped. I wished him luck. :)
p.s. More information about Stiff Person's Syndrome can be found at http://www.ninds.nih.gov/disorders/stiffperson/stiffperson.htm. Why not learn something? Some of the symptoms sound familiar, like a torso that's been in constant, solid muscle spasm for nearly 4 months straight, but Dr. M said that when people have this, literally if you turn the corner and say "boo" they may have spasms that knock them down. I don't think this kind of sensitivity to noise or startle is the same as wishing the kids would play Screechy Von Screamer in some other room. Interesting, though, that anticonvulsants are one of the treatments -- my bipolar cocktail, which I said goodbye to in October, included two anticonvulsants that are also good bipolar meds. Isn't it interesting how it all works together? Even when it's working against you?
No comments:
Post a Comment