bad news for my baby sister
Jul. 9th, 2003 09:19 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
celticdragonflyI am currently torn between wanting to cry or curse, and can't quite manage either. Just got some really sucky medical news about my baby sister.
She'd been having a lot of joint pain for a long time, but hadn't had medical insurance until just recently. She's finally getting in and getting it all checked out, and my mom's been keeping me updated. The doctor was suspecting either rheumatoid arthritis or lupus. My paternal grandmother has lupus, so it runs in the family. (Heck, autoimmune problems in general are all over the family, which makes the autism make more sense the more I read about it - and thereby the more fanatic I get about avoiding the potential triggers)
At first the tests were looking like RA, but then maybe lupus. The doctor said they were similar, and were treated with many of the same drugs. But he wouldn't start her on anything until he'd run more tests. (Which had to annoy Robyn - he'd already refused pain meds until he had more tests run. Poor kiddo, she's been hurting for so long. She tells me she's training her cats to jump up to her, as it hurts too much to pick them up)
They had to go run tests with an eye doctor, as some of the meds can cause detached retinas, so you have to check that first, and then follow up on it regularly. They also wanted a brain MRI. The eye test came back fine. The MRI came back seriously abnormal, with lots of lesions and demylinization. The guy reading it was thinking maybe muscular dystrophy? The doctor said no, it wasn't, but if the guy reading it had known they were considering lupus, he'd have understood it.
Apparently it's looking like central nervous system lupus. Which apparently has a risk of serious cognitive deterioration. Which is the scariest thing we can imagine, just like Miles. I hadn't known it could do that - I've known two people with lupus, and neither had that kind of involvement, it didn't seem like more than a long-term nuisance to them. This is scary.
She apparently has been having weird occipital area tingling off and on, and occasionally gets almost an OOB experience - Mom said it sounds like "absence seizures", but she's never witnessed one. The doctor was asking about seizures, and Mom mentioned it. They'd never have thought to go to the doctor for just that, so maybe the joint pain was a blessing in disguise. The neural tests are showing some physical weakness - maybe she'll get lucky and it will hit motor control - I know she'd far rather end up in a wheelchair than losing her mind. (Heck, she's dealt with physical troubles all her life - premie with major vision and coordination roblems. She knows how to deal with that.)
There are new and better meds for this - the doctor won't start her on anything until he's gotten her in with the best neurologist in town, but he wants that to happen soonest, and is going to be working directly with the guy to get her in quick. Some of them apparently can stop, even reverse the damages. Some are apparently anti-malarial drugs. One drug that's been mentioned is Cytotoxin, which is apparently usually a chemo drug. Apparently has nasty side effects, including sterility, which has her pretty upset. (Although I expect the possibility of cognitive loss scares her more.)
And I can't do a darned thing. Except try to be a sounding board for my mom and sister. And worry about could this happen to me or my kids. Darn it, onset age is 25-50 (there's a nice narrow range, agh) - Robyn's
only 23.
She'd been having a lot of joint pain for a long time, but hadn't had medical insurance until just recently. She's finally getting in and getting it all checked out, and my mom's been keeping me updated. The doctor was suspecting either rheumatoid arthritis or lupus. My paternal grandmother has lupus, so it runs in the family. (Heck, autoimmune problems in general are all over the family, which makes the autism make more sense the more I read about it - and thereby the more fanatic I get about avoiding the potential triggers)
At first the tests were looking like RA, but then maybe lupus. The doctor said they were similar, and were treated with many of the same drugs. But he wouldn't start her on anything until he'd run more tests. (Which had to annoy Robyn - he'd already refused pain meds until he had more tests run. Poor kiddo, she's been hurting for so long. She tells me she's training her cats to jump up to her, as it hurts too much to pick them up)
They had to go run tests with an eye doctor, as some of the meds can cause detached retinas, so you have to check that first, and then follow up on it regularly. They also wanted a brain MRI. The eye test came back fine. The MRI came back seriously abnormal, with lots of lesions and demylinization. The guy reading it was thinking maybe muscular dystrophy? The doctor said no, it wasn't, but if the guy reading it had known they were considering lupus, he'd have understood it.
Apparently it's looking like central nervous system lupus. Which apparently has a risk of serious cognitive deterioration. Which is the scariest thing we can imagine, just like Miles. I hadn't known it could do that - I've known two people with lupus, and neither had that kind of involvement, it didn't seem like more than a long-term nuisance to them. This is scary.
She apparently has been having weird occipital area tingling off and on, and occasionally gets almost an OOB experience - Mom said it sounds like "absence seizures", but she's never witnessed one. The doctor was asking about seizures, and Mom mentioned it. They'd never have thought to go to the doctor for just that, so maybe the joint pain was a blessing in disguise. The neural tests are showing some physical weakness - maybe she'll get lucky and it will hit motor control - I know she'd far rather end up in a wheelchair than losing her mind. (Heck, she's dealt with physical troubles all her life - premie with major vision and coordination roblems. She knows how to deal with that.)
There are new and better meds for this - the doctor won't start her on anything until he's gotten her in with the best neurologist in town, but he wants that to happen soonest, and is going to be working directly with the guy to get her in quick. Some of them apparently can stop, even reverse the damages. Some are apparently anti-malarial drugs. One drug that's been mentioned is Cytotoxin, which is apparently usually a chemo drug. Apparently has nasty side effects, including sterility, which has her pretty upset. (Although I expect the possibility of cognitive loss scares her more.)
And I can't do a darned thing. Except try to be a sounding board for my mom and sister. And worry about could this happen to me or my kids. Darn it, onset age is 25-50 (there's a nice narrow range, agh) - Robyn's
only 23.
