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Discussion Starter · #1 ·
Hi

Im aware that 95% of people with lupus have a possitive ANA result.

However, my docter (who is a neurologist and does not specialise in lupus) thinks i may still have lupus despite having a negative ANA result.

His reasoning for this is that i have fluid on my lungs, high plasma viscosity, and once i had a high ESR test result with normal CRP. Also have aching joints, some muscle pain, stinging eyes, fatigue, skin infections that wont heal.

Im wondering if this might just be CFS/ME ?

How would docter diagnoses lupus if no ANA present??

Any thoughts appriciated.
 

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Hello and welcome to the boards.

I would suggest you also go treat with a Rheumatologist along with your Neuro doctor. Rheumy doctors are the ones that specialize in anything auto immune.

With that being said my ANA has gone from high positive, to low positive, to negative and then back to so high it is off the charts. I also have other antibodies that have helped aide in my diagnosis. Do you have any other abnormal antibodies that are showing up?

I think your right in 5% of people will be negative on the ANA test. You need a doctor that looks at the entire picture, not just ANA. Also, with the skin issues you may want a biopsy done by a dermatologist. Again, this is what they specialize in.

I would suggest you keep a daily journal of symptoms and take any pictures of rashes or swellings that may be going on. The road to a diagnosis is not always clear cut and sometimes can take a while. What is important is to medically treat your symptoms regardless of your blood test results.

I hope this helps and I am glad you found this site. Take time to read and browse through here. There is loads of great information to learn from.

Join us in the chat room sometime and again, welcome to the site.:wink2:
 

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Discussion Starter · #3 ·
Hi karolH

Thanks for you message!

I think your right and i will look for a rheumy..

Thats interesting about the changes in ANA for you- do they relate to the steriods you are taking or just happen anyway?

I havent had any other possitive antibody tests. Which ones of yours are raised? Im not sure ive been tested for them.

Thanks again

Hanbur
 

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Hi Hanbur, it sounds as though you have a good neurologist. He is looking at the whole picture, which is great. Is he going to treat you for lupus?

The ANA test can fluctuate and change from positive to negative and back again. ANA negative lupus is rare, but does exist. The most important thing is treatment though, so I hope you are going to be treated.

I wondered what is making you doubt it is lupus? Docs are normally reluctant to say it is lupus without being sure so your neuro must have good reasons. In my experience neuros are more sceptical than any other doc! You obviously have some blood work to support his diagnosis. You wouldnt have a raised esr in CFS or other blood abnormalities such as plasma viscosity.

I hope the treatment helps you to feel better.

Deb
 

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Discussion Starter · #5 ·
Hi Debatat

I think i do have a good neurologist. He is holistic..

What makes me doubt lupus? I dont have typical discoid or maller lupus rashes (although i do get random rashes), i have difficulty walking for no known reason which started after a fever (currently attributed to fatigue), and i have been depressed for years and years before i became physicaly ill.

The neuro hasent said definitevely its lupus, just that i need to be refered for *more* tests (even though ive been having tests for 3 months). He has said though that not all of my symptoms are consistant with lupus.. which puzzles me.

I have had no treatment so far, which really sucks. No one seems to want to treat me untill they have a definative diagnosis. Four months and counting...

Thanks lots for your reply

Hanbur
 

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Hello hanbur :)

I agree that you need to listen to the neuro and look into it further. Referral to a rheumy would be a good idea.

It seems to me (but I am not a doctor) that you have too many specific symptoms to be caused by CFS. Whether they are lupus or not won't be clear until it has been investigated a lot further.

Not everyone who has lupus has the malar rash or discoid type lesions. Some may have the malar rash from time to time and some may have it so lightly that it is just a "glow" on the cheeks.

Let us know when you get your referral and how it goes,

Katharine
 
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