Plain English needed
 

Can anyone tell me in plain English what CNS Lupus is, does and is treated?

They are fairly positive I have MS but there is a question of if it may be CNS Lupus. My LP showed ANA (or is that ANNA) in my CSF - not super high but definately above normal ranges. From what I can garner MS and CNS Lupus can present fairly similarly.

I can't seem to find much that isn't either 1) "...the most serious form of SLE disease with a poor prognosis. {and that's it for info}" or 2) written in medical jargon to hard to understand

Much thanks to anyone who can shed some light on this for me:)

You may have already seen this article but it explained it in terms I could understand - and that's saying alot 'cos it's hard for me to understand even layman's terms sometimes!

I hope this helps.

http://www.lupusinternational.com/re...chures_09.aspx

You may have more luck at

Lupus.org

or

Wehavelupus.com (a great message board group)

:hug:

Actually I am here for the opposite reason - I definitely have lupus (high level of multiple antibodies) but my disease resembles MS so I am interested in reading about MS (it that makes any sense at all).

Definitely go have a look at the lupus foundation of America Website - there is a lot of up to date information on there.
http://www.lupus.org/newsite/index.html

There is also a message board you can post questions on.

The prognosis of lupus is no worse than MS - it depends on the severity of the disease (there is a range, some get it worse than others). But, overall it is a chronic disease that needs managing rather than a fatal one, if that is what is worrying you.

Some have it very mildly indeed, and it hardly impacts on their lives, others have it very severely with severe impact on their live. The new name for cns lupus is NPSLE.

Having an ANA that is only a bit high is not diagnostic of lupus. The ANA is a screening test that means that further testing should be done. Anti-ds-dna's when present are diagnostic of lupus.

Many people who don't have anything wrong with them at all can have a low positive ANA but, seeing you obviously have neurological stuff going on it would be sensible to have further testing to rule in or out NPSLE.

The other disease that is related to lupus and often confused with MS is Antiphospholipid Syndrome. The treatment for that is very different than for either MS or lupus, so it can be important to distinguish between MS and APS. I have APS as well as lupus, and am on coumadin for it (anticoagulation therapy).

hth
Raglet

Correct me if i'm wrong, but what I'm getting is that if you get lupus, it may go after your CNS, hence the CNS lupus label.

They tend to tx lupus with steroids, is what I've heard. I'd guess that it would depend what sx you have, and why you have them, as to how they'd tx those.


You might have migraines from CNS lupus but tx with BP meds, for example, if Bp is the issue. Where as I tx with topamax, it's more a nerve thing for me.

That sound about right?

Sorry it seems so scary, J, but try not to let it knock you for a loop. No lupus is good lupus. But then, no ms is good ms either.

:rolleyes:

Thanks guys (ahem, ladies)

I'm not really scared, it is just that I found such limited information other than it was the "worst" version of lupus. I sat here thinking to myself "Gee, that's not really helpful." I imagined that just like MS or any other chronic illnees, you could have a version of X that is usually mild (but knocks some folks for a loop) you could also have the bad version and be relatively fine. Having the NPSLE initials/name brought up much more info on google - but I don't care for the name because it makes it sound like a mental health issue which I don't have. They ought to let patients decide what to name all these various disorders - lol

I think that each person shows symptoms dependent upon what area of their body was attacked, regardless of their illnesses name. Sort of like get a spot or 2 in the wrong part of the brain and it puts you in a chair, whereas other folks could light up like a Christmas tree and have much more mild deficits. Yes?

Still pretty sure it is MS but definatley show signs of SLE. Who knows, maybe after all this time I'll hit the lotto and be tagged with both {my attempt at sick humor}

Thank you for all your help decoding this everyone!!!:grouphug:

The only thing I do know is you can have a diagnosis of Lupus AND a diagnosis of MS.

My son's ex-girlfriends mother has both Lupus and MS.