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Annie, I'm glad you brought it up -- I think my sister might have it -- I've been talking about it for about a year.
persistent headaches -- even though she is now on 200 mg of Topamax daily
pleurisy almost constantly since she was in college (she's now 40)
nose ulcers which turn into Staph infections (she's had over 18 infections in the past 10 years)
fever (she will run a temp one or two days a week -- 99° or 100°)
she works during the week, then rests/sleeps all weekend (profound fatigue)
somtimes her legs and ankles swell and we don't know why
Is it as hard to get dx'ed with Lupus as it is with MG? Could a GP run the blood test or does she need to go to specialist?
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I do know a lot about lupus. I was a designer and writer, not a staff member, for the foundation but you have to know a disease to be able to promote the funding, research and education of it! I still maintain friendships with those I worked with there, almost 20 years later.
I wonder if she has had the lupus anticoagulant tests done:
http://www.labtestsonline.org/unders...lant/test.html
Headaches can be caused by so many things. I imagine she saw a neuro to get the Topamax but maybe not. Headaches are in the realm of neuros, however, they can be caused by other body "systems" such as heart issues.
In general, her symptoms do look like lupus. Has she seen a rheumatologist?
Leg swelling can be from peripheral artery disease/occlusions. That's quite serious. If a person is having trouble getting oxygen "around" the body, they can get headaches as well. Does she ever have leg pain? Intermittent leg pain?
The best thing to do is to find a GOOD rheumatologist. The local lupus foundations usually know who are the good ones who understand lupus. Not all do. It can "flare" and a doctor who isn't as knowledgeable will discount the symptoms if the test results aren't positive right away. A good doctor will look at all the "clues" and keep following a patient if they suspect lupus but tests aren't coming back positive yet.
You know autoimmune diseases . . . they like to hide.
Lupus is dangerous. It can attack anywhere in the body. The heart, the lungs, the kidneys. Does your sister ever get rashes after being out in the sun? Does she feel worse after being in the sun? Does she get a rash on her cheeks (the ones on her face, not down there!!!).
A GP could run the tests but then what would they do? They aren't an expert. They could run them and refer her or just refer her and let the expert run the tests. There are tests that a GP probably would not run or know to run (i.e., C3).
http://www.lupus.org/webmodules/weba...364&z=0&page=4
I'm not a doctor, so I can only speculate. I would suspect some kind of autoimmune problem due to the fevers, the infections, etc. Only a doctor can figure all that out though.
I hope this helped.
Annie
Oops, one more thing. If she has lupus, she should be prepared to potentially have a "group" of doctors, since lupus likes to create havoc on so many different body systems.