View Full Version : Hello! I'm new!
12-12-2007, 10:12 AM
I'm Tara I'm so glad I found this message board. I've been reading some posts and it is nice to know I'm not alone with the symtoms and confusion.
I haven't been officially diagnosed with lupus, but my rheumy is strongly suspecting lupus. There just isn't enough to diagnose yet. I've had joint pain for almost two years now I think, and fatigue for, well, I can't remember the last time I didn't feel tired. And rashes. Not on my face, but on my legs and stomach and just strange places for no apparent reason. Last year I tested postive for my ANA, but the rheumatologist then just said it was benign joint pain and basically made me feel like it was all in my head. Last month I went to a new dr and she listened and was wonderful! This time my ANA was negative, which with the fluctuation made her more suspicious, and my complements were low. All other blood tests were normal. That, along with my other symptoms and with lupus in my family (extensively on my mothers side) is making her suspect lupus, but just can't diagnose yet. She started me on Plaquenil and Celebrex to see how I respond, and plans on doing more blood tests in about 6 months.
In the meantime, I'm trying to learn more about the disease but it is all so confusing. Everyone seems to have different symptoms and is affected differently!!
Thanks for listening....
12-12-2007, 12:46 PM
Yes, the autoimmune conditions are weird - we all have different symptoms, many (most?) of us have lupus as our dx, but no two of us are alike in symptoms or aches and pains. No wonder the docs have such difficulties!
Finding a doc who listens is a godsend. I'm so glad you have! And I'm glad you've found us - we're here for each other with knowledge, support and (of course) hugs.
sick n tired
12-15-2007, 11:00 PM
Isn't the fatigue awful?
My first 2 docs that I went to make it seem like I was crazy or it was all in my head. In fact, one Rheumy told me that one of my problems he liked to refer to a "crazy womans disease"
I went to my present rheumy and he has been great. He listens. He is the first one to take everything serious enough to do other tests and come up with a diagnosis.
12-17-2007, 10:08 AM
I feel ya on the frustration i myself have not been fully diagnosed but have all these weird symptoms.... I am curious though about this rash, is this the first thing you noticed? ( i mean the fatigue, we all probally over looked that one with blaming it on day to day things or stress)
12-18-2007, 03:24 PM
I think the rash was first. I can't remember when I started feeling so tired. The dr had no clue what the rash was but gave me a high dose of prednisone for a short time, which cleared it right up but left me feeling so bloated from the meds! I knew my grandmother has lupus (and probably my mother but she refuses to go to the dr) but I knew so little about lupus so I just didn't put all the pieces together.
I had such bad luck with drs that I was at the point that I just wouldn't go because they wouldn't help me! My husband insisted I see another rheumy and I'm so glad I did! What a difference to find someone who doesn't think I'm crazy!
01-31-2008, 09:00 PM
I've been gone from the forum for a long time..... but have just browsed through posts and found this one.
Yes, lupus symptoms are so different and the illness is very confusing. We all seem to be so different in the way we suffer the illness. After 10 years of living with lupus I still don't understand it fully.
Regarding ANA's. Mine have been sky high since around 1998 (first round of tests). I have the joint pain, rashes, nausea and fatigue. My specialist told me he was 99% positive I had lupus although the only things that indicates it (test wise) is the ANA levels. My doctor recently told me that I didn't have lupus and that I could have any form of auto immune disease and that it didn't really matter if it was ever discovered. To me it did matter - I'd been living with lupus for many years and to be told that "you have an unknown disease and we don't really know what to do with you" was very unsettling.
I've since changed doctors, and my new doctor listens too.
02-01-2008, 09:31 AM
Hi Tara -
Just wanted to welcome you. Getting a diagnosis is not easy. I am fortunate to be working with a rheumy whom I believe is top in her field...after going through several docs who more or less sent me packing, even though I have seriously high ANA titers, low complements, anemia, etc. You must NOT let anyone convince you that you are "crazy." As of today (three years after the onslaught on my current set of symptoms) I have found a wonderful rheumy who has not yet put a label on my auto-immune condition. The label itself has serious consequences, in terms of insurance, etc. Therefore, it is important to fully understand what is going on before the label sticks. Reluctance to call it "lupus" is not necessarily a bad thing. My rheumy recognizes that I am not well, and she is willing to do something about it. Recognition by your doctor that you are NOT crazy and willingness to help you improve your health is a gift. If your current doctor uses that approach, I can tell you from personal experience, it's a blessing. Hopefully, the medications your doc has recommended will soon improve your quality of life and you can work from there toward getting a diagnosis. In the meantime, you are not alone. There is lots of support here, diagnosis or not. Best of luck to you.
sick n tired
02-01-2008, 10:54 PM
I too had trouble with docs taking my symptoms seriously and saying or intimating that it was all in my head. Last fall, when the blood tests came back and I started trying to find someone other than a general practitioner I went to two docs in a row who made it all in my head. The second one was a rheumy and told me that he liked to refer to fibro as crazy womans disease. I don't know what he called people with lupus because I did not stay long enough for a diagnosis. I lamost didn't go back to any doc. I was so upset. I was glad that I tried one more, because he is great and sensitive. He listens.......I guess perseverance works.