Hi all, I'm new here.

I have SLE (lupus). Very high ANA's esp double stranded and smith, and am now having tia's. I also have cranial neuropathies and peripheral neuropathy.

BUT my sed rate and complements are always normal. I'm having trouble with treatment and I"m getting worse.

My platelets are very high and my wbc's are high, rbc's anemic.

HELP!

ps nice to meet you, I'm Julie

Welcome to NeuroTalk:

You might want to visit our peripheral neuropathy forum too:

http://neurotalk.psychcentral.com/forum20.html

We have a few posters with autoimmune issues there.

You don't mention what treatment you're receiving.

SED rates are indicators of inflammation, but not of actual disease process...which may be active in other ways. There is an autoimmune process called antiphospholipid syndrome (APS) and can cause blood to clot....setting the stage for TIA"S/strokes, etc. There is a simple blood test to check for APS, called aCL (anticardiolipin). Already having one AI disease opens the door for a secondary AI process. I would suggest asking about this test since you're experiencing TIA type symptoms.

thanks for replying. For lupus I take plaquenil and meloxicam as needed. I take high doses of prednisone (60mg) during flares.

I had a tia this past weekend. I'm waiting for new labs to come in. Last time my antiphospholds (sp) were checked, they were fine.

I found some info that says that high wbc's can interfere with sed rate labs. I'm being referred to a hematologist. I'm hoping that will help. I also see a new rheumie in August.

I hate having to work so hard at my healthcare. The tia was scary and seems surreal now...thurs eve had a backof head pulsating headache that was the worst ever, in fetal position for 3 hrs then Sat eve my nose turned red and the left side of my face went numb. (not this weekend, last weekend, sorry)

Love and HUGS, Julie

And so is my brother's. We both have Sjogren's, Fibro, Discoid Lupus. My doctor's don't think it's significant, they can't explain it either. Some say it's because I take prednisone but it has never been over 5, even before I started taking it.

How are you doing now? Did your Hemotologist find anything? I go see mine in a few weeks. I have a history of high blood iron. Last year my transferrin% was high, but since ferritin is normal I don't have hemochromatosis. Also have anti-MAG antibodies.

Does a positive ANA for Sjogrens indicate a definite or possible diagnosis?

I had a high ana and pos ssa but my rheumy didn't commit. Said 'I think you probably have Sjogren's, " etc. My brother had high ana and pos ssa and his rheumy gave a dx of sjogrens. Neither did a lip biopsy. Guess it depends on the doc.

Wish I had seen this sooner. You probably gave up. Wish we could get notifications.

Hi,
I have had positive high ANA on and off. My sed rate have never been high.
I have positive skin biopsy for vasculitis, positive EMG and NCS, for peripheral neuropathy, Autonomic Reflex study positive for small fibiber neuripathy by sweat study.
I have borderline Lupus Anticuagulant test.
I have all the symptoms of systemic inflamation.
Have had Prednisone with good relief
I take Cellcept now for the vasculitis, was on Methotrexate before.
I have all synptoms of Sjoegrens. I have had the blood test a few times, always negative. Lip biopsy also negative.
Doctors have told me that the blood test for sjoegrens, have a false negative 6 out of 10 times.
So, I guess, it is really frustrating to get diagnosis to fit.