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Please help me to understand a lupus diagnosis

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Posted 12/10/2009 6:27 AM (GMT 0)
Hello all,

I've been very interested in studying lupus, and am currently completing my doctoral dissertation on this topic (early stages). Specifically, I am comparing neuropsychatric SLE with non-NPSLE.

When given a diagnosis of "lupus", do physicians indicate which specific subform (including neuropsychatric, SLE, lupus (single organ)) impacts you? Or, do physicians just label all these forms under the greater umbrella term of lupus?

Best of luck, and thank you for your responses.

Posted 12/10/2009 6:40 AM (GMT 0)
Most doctors just specify lupus(SLE), unless they mean Cutaneous(Skin) Lupus.

As a matter of fact, I've read all postings on this forum for several years, and this is the first I've heard of "neuropsychatric lupus". I hope you'll come back and tell us about it.
Posted 12/10/2009 7:13 AM (GMT 0)
I was just diagnosed with lupus a couple of months ago. My rheumatologist did not think I had lupus initially, due to a negative ANA (although I had a high level of anti-DS-DNA autoantibodies) until one night when I developed a blazing red malar rash. I immediately took a picture of my face and emailed it to him.

He asked me to come in right away and told me that I had clinical lupus. He did not specify any particular type at the time.

I've had a number of neurological symptoms and thought perhaps I had MS, but two MRIs were clean. Now my rheumy believes I have CNS lupus....or CNS "rhupus" because I have RA too. I'm seeing a neurologist tomorrow to explore the possibilities.

Is CNS lupus the same thing as neuropsychiatric lupus?
Posted 12/11/2009 11:26 PM (GMT 0)
Hi Gekbi

( BTW neuropsychiatric lupus is the more recent medical term for CNS Lupus)

I would say that the diagnosis given is generally SLE for all practical purposes but if the CNS symptoms predominate then that will be mentioned as a precision rather like lupus nephritis. There are a few people whose lupus symptoms are primarily NP just as there are a few people whose lupus shows most significantly as nephritis. However most of us have some sort of NP symptoms and most of us have some kidney involvement maybe relatively slight and from time to time.
In the case of NP lupus 'brain fog' or cognitive difficulties are very common whereas psychosis is rare. In the case of nephritis there is occasional protein loss but kidneys damaged to the point of needing transplant is relatively unusual.
The term CNS or NP lupus begs the questions what exactly does that mean in each case just as SLE does, because there are so many manifestations, whereas nephritis is a question of degree.

I agree that the main formal distinction is between cutaneous lupus meaning affecting only or mainly the skin, with no criteria for an SLE diagnosis, and SLE systemic lupus which may not affect the skin at all.
Yes, of course the doctors indicate how it is affecting you as an individual both in the case of SLE or CCLE or SCLE but they dont necessarily indicate this in the formal diagnosis codes.

Hope some help

BB

Post Edited (BumbleBee1) : 12/11/2009 4:31:33 PM (GMT-7)

Posted 12/12/2009 12:01 AM (GMT 0)
Interesting topic. I was originally believed to have "pure" kidney lupus at the onset of the disease. However, I later developed more "typical" systemic symtoms and it's gone down hill from there. I had a moderate-severe "episode" of what my docs called lupus cerebritis. It responded well to treatment (large steroids) and hasn't recurred. When my doc lists diagnosis she no longer lists the Lupus cerebritis. She writes SLE, Lupus nephritis, htn, anemia, etc...So, i've just always viewed it as a "manifestation" of Systemic lupus.
Posted 1/13/2010 11:36 PM (GMT 0)
How much of a chance is it if someones ana is positive,will lupus show?anybuddeee?
Posted 1/14/2010 12:58 AM (GMT 0)
I'm not sure what the statistics are...I know you can have a positive ana with no disease process and I have biopsy proven lupus and have never had a positive ana. You can probably do an internet search and find some actual numbers/percentages. Good luck. Judy
Posted 1/18/2010 12:23 PM (GMT 0)
I have read that 95% of those with a positive ANA do not have lupus. The higher the titre the more likely results are due to connective tissue disease especially lupus. Lower levels ( < 1:160 ) are common for many reasons and can be found in perfectly healthy people. Further blood tests can reveal other significant autoantibodies. ANA is not specific and doesn't rule lupus out or in, it is just one part of the overall picture. But it is harder to get diagnosed if ANA is negative or very low titre unless you have a lupus expert rheumy.

:)
BB
Posted 1/20/2010 12:40 AM (GMT 0)
I was diagnosed with CNS lupus after 18 months, I initially had a seizure which showed a lesion which suprisingly got bigger. At first they thought I had a brain tumor than they dx with encephalopathy. They then put me on prednisone for about 4 months, My joints began to get swollen and i asked for an an ana which was positive.  ironically as the lesion shrunk my seizures began to get worse and then i began to develop r sided weakness and word finding problems. Finally in july 09 i was transferred to a university hospital where they did a lp and finally dx me.  Am now on chemo
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