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Topsy, Hi. Have you read the "sticky posts" = the permanent posts at the top of the thread list? Look there for lists of how lupus is Dx'ed, lupus symptoms, a so-called "alternative criteria" list for lupus developed by one of the top rheumies in the world, and for APS ( = antiphospholipid syndrome, which is a clotting disorder seen in lupus or seen "standalone").

Have you read any books on lupus? I'm not sure of all the authors available in the U.K., but one sure bet would be Dr. Graham Hughes. He's one of the best-known rheumies in the world & is the doctor who did breakthrough work on APS. He also authored the "alternative criteria" list you see in one of the "sticky posts".

Lupus can disrupt the autonomic nervous system, resulting in a wide variety of things: Raynaud's, headaches, livedo reticularis (lacelike mottling of skin), tingling, etc.

Lupus can also be the underlying cause of OTHER problems that cause dizziness & weakness. One example is anemia.

I had episodes that felt like dizzy panic attacks for years, while driving, in elevators, in the subway, etc. I'd hadn't been prone to panic, either: I was the kind of kid who wanted to ride the roller coaster in the amusement park all day long. 'Twas awful... I haven't had such problems since starting Plaquenil, so I'm guessing they were lupus-related.

Hope there's something in here that helps & that you keep posting here as you work thru your problems. Good luck & best wishes, from Vee
I have personally suffered from dizziness from the get go - and I was diagnosed back in Dec. of last year with SLE, then two weeks later Lupus Nephritis IV. I'm on prednisone, and quite a few other meds as well. Was on chemo for 5 months but had to change to another regimen due to complications from the chemo. Almost every time I stand up I get a dizzy spell with tunnel vision where everything starts going black all around and into a pinpoint - on one occasion I even had what I thought was a seizure!! I was shaking and trembling so bad uncontrollably it really scared me - lasted about a minute. Usually I can hold myself up against a wall and close my eyes and although get weak in the knees it will pass...but sometimes it's bad enough I HAVE to sit down or I'll fall down - that was one of those times. I have been told by my doc he's not sure if it's a symptom or a side effect - basically I've just gotten used to it and accept it as a part of having to deal with this although I absolutely hate it. Makes me feel so powerless at times.

At my last appointment, my doctor told me that mine was the most aggressive he had seen in years, and after consulting with doctors at Vanderbilt (cancer center) in Nashville, TN., they also concluded mine was extremely aggressive and more aggressive then many they had seen in a while as well. I'm in almost a constant state of flare, fatigue, pain, nausea, you name it...and it's getting old really quick but I've just learned to take it slow and a day at a time the best that I can. Somedays, I just want to cry. I'm sorry, I'll get off my soapbox now, but I can definately relate to kidney problems/dizziness all rolled into one...it sucks.:p





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