Do you think I really have SLE? and is Plaquenil right for me? :o) Pleasssse help me!!

[ihavefitz]

Hi there,

I have a history (about 4 years or so) of dizzy spells, blurred and double vision, pins and needles in my face, migraines and tiredness. I went to the doctors for blood tests and it came back that I had past infections of ross river, barmah forest virus and epstein-barr. I also had an ESR of 103 and a few abnormalities in my blood but nothing else major.

I was referred to see a general physician bit didnt quite get there before I had a major seizure (followed by 2 more in hospital). I had a few tests done and my EEG and CT came back normal, but my MRI showed up 4 lesions in my brain. I tested positive to ANA, and weakly positive to anti-DNA. I had a high titer of anticardiolipin antibodies in my blood as well. The neurologist diagnosed me with definate SLE, but my immunologist said it was only likely that I had SLE, and that the anticardiolipin was causing my problems?! The immunologist did more blood tests and it came back that was ANA was now only slightly raised and my Anti-DNA was now negative.

Is this normal or does this indicate that it isn't SLE? I have been trying to look up whether these values only increase during flare ups, but havent been able to find anything.

Also, I have been started on Plaquinil, but have since been extremely dizzy everyday (feeling almost like I am going to collapse) and I wanted to know if anyone knows if plaquinil would be causing that or if its just a coincidence, and if you even think this is the right medication for me.

I have felt very lost these past few weeks, and it seems nobody (the neurologist or immunologist) can give me a straight answer, or that they even understand each others perspective. :S I have already had 7 weeks off from work, and am still unsure if I can go back yet or not which means I am also broke (to add to my stress's!!) I would really appreciate it if somebody can give me some advice on what to do )

[Kecia]

I have been diagnosed SLE and I'm surprised to read that you aren't seeing a rheumatologist. A rheumatologist is an internist who is qualified by additional training and experience in the diagnosis and treatment of arthritis and other diseases of the joints, muscles and bones. Please look into finding a rheumatologist that you like.

When I was diagnosed, I was 17, I'm now 37. For years, I took Plaquenil every day without any issues. But when I found my most recent doctor about 7 years ago, he told me that he wasn't entirely convinced that I had SLE because my bloodwork was so good and I had none of the regular SLE issues. He cut my dosage back to 1 pill 3 times a week and I've been fine ever since. We're both reluctant to stop the Plaquenil completely because when I go off of it, I get flare ups.

My point is this - you may have the markers, but not the full blown disease. You may need meds, but not the dosage that you've been taking.

It sounds like you have other medical issues at play. I strongly recommend finding a rheumatologist. The worst case scenario is that he/she can't help you. Best case - you finally get your answers.

I wish you the best of luck and I hope that you get the answers you need to be on the road to recovery.