At the moment I have just beeen told by my doctor that I have a kidney infection. Its totally washed me out, not to mention feeling realy ill. I didnt realise just how sick it can make you. I havent been diagnosed with Lupus, still under investigation. After years of going back and for to see a neurologist, he finaly says "Im not sure whats wrong, but I think you need to see a rheumie".
I have had and am still having many problems, ie: extreme fatigue, painful wrists, stiff aching muscles, over sensitive to heat, spasms, light sensetive (at times), memory problems, depression, the list goes on. However, rite now as mentioned, im trying to deal with this kidney infection. Just before I got this I started feeling very dizzy, have had on/off dizzyness before, but this seems to be staying and its not getting better. My head feels slushy, its affecting my focusing when I turn my head and im getting pins and needles in my hands. The neuro ran some tests and all he has said so far is he suspects a systemic inflammatory disease. Do you get dizzyiness with Lupus?..and does this sound like Lupus....thank you to anyone that can help.....
Dizziness was a real problem for me for several years prior to diagnosis. I would get so dizzy at times that I would have to pull my car off to the side of the road, or if I was home I would make my way as quickly as possible to the sofa or bed until they would pass.....and they didn't last long, but they were aweful when they came on.
Hope you get some answers soon as to what is causing your problems.
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
Thanks so much for your reply, I will take your advice and read the sticky posts. Some days I feel like there will never be an end to all this, I know my own body, it clearly isnt working properly and then you have to put up with some jumped up neuro who suggests an investigation into my state of mind mite just be the answer. Its laughable!...Why does it take so long to get answers?...The whole proccess is SO frustrating. Anyway, Im not ready to give up yet. Thank you for your support, I will no doubt post again with some more questions or frustrations or even just vent. Take care.....
Went to the Dr this morning, who said she doesnt see why I should put up with these symptoms anymore. She has given me Predniolone for 10 days to see if I respond well to it. She says it will answer alot of questions if I do respond well. Still waiting for my appointment with the Rheumie, hopefully wont be long. Is this a drug thats used in Lupus, has anyone been on it and does it help?...Im praying it does.....
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.