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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Grand Magnate
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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. Last edited by AnnieB3; 10-26-2009 at 11:48 PM. Reason: Geez, it's really late. |
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No, my sister hasn't had ANY lupus tests. So far, I can't convince her OR any of her doctors.
She sees a migraine specialist -- at the same clinic where I see my MG specialist. Her heart is ok as far as we know -- they checked it out pretty completely BEFORE starting her on all of the meds -- she is ALSO taking Maxalt (has tried all sorts of others -- arrrggghhh). She IS down from 28 days of headaches a month to 7 or 8 days -- a HUGE improvement, but we'd all like even more. She hasn't seen a rheumatologist -- from what I understand, it would be easier to get a private audience with the President or the Pope. Rheumys are in VERY short supply in our neck of the woods OR very, very overbooked. She doesn't LIKE to be outside, so not really sure about the sun. She DOES have a recurrent rash on her legs -- but it is itchy, red, and scaley -- usually in circular areas. I do remember her breaking out all over her face a couple of times (not butterfly pattern) -- and we didn't know why -- she has fantastic skin -- small pores. At one point, she had a droopy eye and was slurring her speech -- I was convinced that she had MG. Of course, she had a very sophisticated MRI at the beginning of her migraine "journey", so MS was more or less ruled out. They ran the AChR panel -- negative. The neuro was convinced that these were simply migraine aura symptoms. I read that Lupus was the great "mimic" -- I wonder........ Annie, you have REALLY helped a LOT!! ![]() |
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Welcome Jana
![]() Love Lizzie |
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#5 | |||
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yes it is!! When it first started it was me, a lady named Lois, and for the life of me, I can't remember the other couple of people. I don't post as often as I read. Been trying to change that.
I'm so glad you're here!! Love Lizzie |
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#6 | |||
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Ya know, Lizzie, I've been sort of lurking since I joined in April -- then, all of the sudden, I started talking -- now I just can't seem to SHUT UP!! Bless these poor people's hearts -- they don't know what has "hit them" -- LOL. You're gonna have to tell em I'm harmless and have good intentions.
![]() Love you too!!! |
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