anyone know anything about it? did a google search… all info seems quite vague. would like to hear more specifics, preferably personal experience. just had a second dr. tell me to get tested for it. :s
doesn’t sound like something that would be successfully diagnosed in Taiwan
It killed J. Dilla.
Your best bet for personal accounts would probably be SLE support groups. Search for SLE support group on Google and you’ll get a bunch of hits. There are tests that can help determine whether it’s lupus or something else, but the diagnosis depends on other factors as well. If 2 docs told you to get tested, I don’t know what you’re waiting for. But I would [EDIT: NOT] trust the diagnosis to a primary care physician. Your best bet would probably be a good rheumatologist.
Good luck!
Definitely get a second and third opinion. I know a couple of people who have been wrongly diagnosed with this. One of these cases turned out to be a thyroid problem, and the other celiac disease.
I was experiencing sympoms like that a while ago. I have since cut out almost anything with wheat gluten and I feel better.
But hey, I’m no doctor.
[quote=“canucktyuktuk”]Definitely get a second and third opinion. I know a couple of people who have been wrongly diagnosed with this. One of these cases turned out to be a thyroid problem, and the other celiac disease.
I was experiencing sympoms like that a while ago. I have since cut out almost anything with wheat gluten and I feel better.
But hey, I’m no doctor.[/quote]
i already have thyroid disease… no other symptoms like the websites describe… except i went to the dermatologist for what seems like a rash, on my face… no where near the degree of the malar rash pictures on the web. I’d rather wait until im in my home country to see a Dr. about this…
anyways, thanks for the replies.
Sorry, what I meant to say above was that I would probably NOT trust the diagnosis to a primary care physician. Taiwan does have some fine doctors but, as in the US, it’s hard to know which are good and which aren’t.
From the little I’ve read on it, early diagnosis and treatment are considered important for limiting the effects of the disease. I don’t know what your symptoms are but, IMHO, if you have NHI here and you’re not going back home for a while, it wouldn’t hurt to have some more blood work by a specialist here. You can always choose to ignore whatever they tell you, and you’ll have “baseline” data to show your doctor back home.
My father had it, and from what I can remember being told after he was diagnosed with it, it’s not a nice thing to have.
Unfortunately, I can’t offer much else. My father died 17 years ago when I was in high school, and had only been diagnosed with it for a year or two before he died, so what little I learned, I’ve forgotten. I do know that it’s not hereditary, and it’s not something you can catch. It’s just something you have.
FWIW, my father died of a heart attack (while in hospital recovering from a broken leg) not lupus. Although my dad did have poor general health and a very weak immune system at the time - I honestly don’t know whether this was caused by lupus or not.
If you need to know more, I could ask my mother, although my parents were divorced at the time and didn’t really speak to each other, so I’m not sure how much she knows about lupus.
I had a friend who had it when I was younger. I hope to god you don’t. It is always strange the way the body can turn on itself.
Autoimmune diseases suck. But with the proper meds and taking care of yourself they can be driven into remission.
I haven’t taken a pill in going on two years for anklyosing spondilitis.
First things first. Get thee to a Doctor bushibanned. But, beware, there are NOT a lot of Autoimmune specialists in Taiwan. PM me if you can’t find one near you.
Good luck
jds
[quote=“canucktyuktuk”]Definitely get a second and third opinion. I know a couple of people who have been wrongly diagnosed with this. One of these cases turned out to be a thyroid problem, and the other celiac disease.
[/quote]
I would like to give you the same warning. I have a friend here who was diagnosed with lupus in Taiwan. She went through the whole horrible process of reading up about how bad the disease can be, freaking out, only to discover later that she has been misdiagnosed. She went for other tests here and back home, and luckily it turned out that she was misdiagnosed here in Taiwan. Especially if you have a thyroid problem already, because those symptoms can sometimes be similar.
I do hope you don’t have it, but make sure you get tested at the best place, and again back home as soon as you have a chance to do that.
Good luck!