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Re: Lupus?
Mar 23, 2008
[QUOTE=VeeJ;3497747]Hi & welcome. Is your dr. a rheumatologist? It may make sense for you to see this kind of specialist, as they're the ones who know lupus & its "cousins".

Here's what I understand about ANA, but I'm merely a patient. It can be positive in multiple diseases, so in & of itself it doesn't "prove" anything. And it can fluctuate. Lupus has "subsets", in which ANA is positive in different percents. Specific autoantibodies are also found the subsets, in varying percents of probability. For example---

DLE (discoid lupus): ANA is only 50% of the time or so. Ditto with specific autoantobodies.

SCLE (subacute cutaneous LE): ANA is positive only about 2/3 or 70% of the time. The most common autoantibody is anti-Ro, found maybe 90% of the time or so.

SLE (systemic lupus): ANA is positive roughly 95% or more. The only two definitive autoantibodies are anti-ds-DNA & anti-Sm, but as many as 14 other antibodies & complement problems are possible.

So, yes, you can have *some form* of lupus with a negative ANA.

If you want to read more, try the 3 "sticky posts" (permanent info posts at the top of the thread list). Also, in most libraries & bookstores, look for lupus hardcovers, by either Dr. Daniel Wallace &/or Dr. Robert Lahita. They each cover lupus & also "close cousins" that can cause many of the same symptoms.

I hope you keep posting here. Sorting things out can take quite awhile, unfortunately. Of 4 people I know well (incl. myself) who were tested for lupus, we got 5 different Dx'es: I have the SCLE form of lupus; one has myositis; one has dermatomyositis; one has Hashimoto's thyroiditis & asthma; and the last is STILL looking to see if she has something more than the very commonly Dx'ed Fibromyalgia. Bye for now, Vee[/QUOTE]
Thank you for the response! I have read thru these posts and you seem to have a ton of knowledge. I noticed the first symptoms after my hysterectomy in 2002. I had an infection for about 9 weeks post surgery and after that I started having problems with my lips. They were so dry all of the time, cracking and peeling. I could literally peel an entire layer of skin off my whole lip. Then my scalp started getting itchy and scaly. Again, I can peel crusty layers off around my ear area. (sorry for the gross detail). Then two summers ago, Memorial Weekend in Michigan, I took one of my sons out fishing for the day and have never had an issue in the sun. My face turned so red the next day and these little tiny white/yellow bubbles formed all over my face. After about 3-4 days they started to dry up and then itched like crazy. I went to the Dr. because I had never had anything like that happen and I thought it was sun poisoning. Unfortunately, that was just the first of events in the sun. I was then sent to a Dermatologist who mentioned Lupus. I now have quite a few other things happening and finally gave in to the suggestion of my physician and dermatologist and was tested for Lupus. Last year, I was having some issues with stomach pain so I went in and they did a CT scan and discovered that my lymph nodes were large in my groin area. (This ended up being a surgery to remove some scar tissue caused from my hysterectomy) but the lymph nodes were to be watched. I haven't been back to the Dr. about that and he hasn't mentioned any follow up on that. It just seems like over time, more and more Lupus like symptoms are appearing so I should schedule an appointment with a Rheumatologist. I have not seen one yet, just my family practitioner. I really do appreciate your feedback and I hope that I can get to the bottom of what is going on with me.

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