Lupus diagnosis for sure today . . .

Discussion in 'Fibromyalgia Main Forum' started by jaltair, Feb 13, 2006.

  1. jaltair

    jaltair New Member

    Today, I was diagnosed with lupus by my rheumatologist. I suppose that I had expected that diagnosis since he’s been following me for about one year for possible lupus, and has had me on Plaquenil for about a year.

    I thought I’d be relieved to find out one way or another that I did or didn’t have it. The teeter-totter that I’ve been on this past year was difficult. At the first visit after the first labs, he told me that I had “early” lupus, then after tests he told me I didn’t have lupus. I had a lot of abnormal tests, but none that he thought would validate the diagnosis of lupus. Then at another visit he told me that I possibly had lupus. Today, he told me the tests were conclusive for lupus. I sat like a bump on a log and didn’t say a word. That’s not like me.

    One big question I had wanted to ask him if the diagnosis was conclusively lupus was, does a diagnosis of lupus mean that all the symptoms I’ve had are from the lupus and the diagnosis of FMS and CFS aren’t real anymore? When I sat there and again mulled the question over in my mind, I remembered a previous conversation with him when he told me a year ago when he told me I had “early” lupus. At that time, he told me that I could have FMS and lupus at the same time and that some have had them both. I didn’t ask that question.

    The other questions I had wanted to ask him just flew out of my mind, I suppose fibro fog. I feel just kind of dull this afternoon. Now I know for sure it’s lupus.
  2. Fudge43

    Fudge43 New Member

    jaltair ... I'm sorry this has been confirmed for you .. but I understand it is a kind of relief .. to know for sure .. I'm in the same boat .. tests are inconclusive last time .. going for more blood tets again .. seeing the rheumy next month as well .. it is an awful way to be, hanging in limbo like this .. a sword hanging over your head .. I just want to know one way or another as well.

    I understand that even though you were expecting this the shock and confusion kept you from asking the questions you want answered .. I'm like that too .. I always think of all the right things I should have said or asked when I get home .. it is so frustrating ..

    I hope you do get your questions answered and they get you on the right medication to help you feel better .. it helps to know some one else is out here that has and is going through the same thing .. please keep posting with how you are doing ?

    Good Luck !
    Fudge : )
  3. MamaR

    MamaR New Member

    I also hope that doc gets you on meds to help you real soon.

    I know what you mean about forgetting to ask doc questions!

    I even write it down and still forget to ask some of them!! That is bad brain fog...huh?

    Thinking about you often.......Mari
  4. KittyCat

    KittyCat New Member

    I was wondering what tests (including blood work) is done to diagnose Lupus? I was diagnosed 2 years ago with fibro and I also have attacks of costochronditis (sp?). I am seeing my doctor tomorrow because this attack is lasting longer. I read that rib cage pain can also be one of the symptoms of Lupus. A year ago they did an ANA test on my blood and that came out normal. Is that the only criteria they use in testing for Lupus? I also experienced alopecia (in one spot in my scalp) but thankfully the hair grew back. I also deal with raynauds in my fingers when it gets really cold or wet outside.

    Thanks for your input.

  5. JLH

    JLH New Member

    I also have lupus .... and fibro, Sjogrens Syndrome, Raynauds Syndrome, arthritis .... and more.

    A lot of the fibro symptoms are the same as lupus. The difference with lupus is that it will do damage to your major organs, like your kidneys, heart, brain, etc. and fibro will not.

    So far, I'm just on Placquenil, and I do have to take the ocassional Medrol dose paks. I hope this keeps it at bay for a while.

  6. jaltair

    jaltair New Member

    Oh Fudge! I hate that you have to go through all those miserable hoops and play the waiting game! Sure hope that you don't have lupus ... isn't it horrible that all of us with FMS have to do all this testing, guessing, waiting, and hoping that somehow something will be identified that is the cause of our health problems? It is frustrating .. frustrating as heck! I'll keep you posted, and you do the same.

    Hi prickles. As far as I know there is no cure for lupus. Just like FMS, they aren't sure why people get it. Unless they know that they can't find a way to cure it.

    Hi vilke. There are all kinds of treatment for lupus now, you are right. One good thing, I guess, is that I'm 59 years old. When people are older, they usually don't develop a lot of problems. Right now, my rheumatologist is keeping me on the Plaquenil only. I'd like to stay of the other meds I read about as there are too many side effects.

    KittyCat - Lupus is diagnosed by using criteria that a group of rheumatologist put together. There has to be some positive tests and some symptoms. I forget what all of the tests are as well as the list of symptoms. If you go to Google and do a search under lupus, you'll find more information about Lupus. You mentioned some symptoms that you have that are also symptomatic of lupus. I think I copied and pasted a post some time back that someone on our Board posted regarding all this. I'll look for it and post it back on here. Right now I'm really tired and just feeling, for a better term, like "s--t." Will have to rest, but will get back regarding the specifics soon.

    L, Jeannette
  7. claudiaw

    claudiaw New Member

    diagnosis, but I wanted to tell you that my sister in-law was diagnosed with it ( the systemic kind that can effect your organs), and she has been without symptoms for several years now. She also has 7 children! They usually tell you to not get prgnant as the symptoms worsen.
    She got herself off meds and in remission (or healed, depending on your beliefs:)by going on a nutrion program. Don't want to give false hope , I know everybody has a so called "cure" for me, but wanted to give you some hope, so maybe it will help with any fear you may have.:)
    I have heard that virues or even over load of yeast can make someone test positive for lupus. Again just want to give you things to think about. Take care.Claudia
  8. bp59

    bp59 New Member

    I have had lupus for 21 years... No organ involvement for me.. I have been diagnosed with rheumatoid arthritis for 4 years along with fibro. Hepatitis C for 2 years and now perhaps only polyarthritis.
  9. futurehope

    futurehope New Member

    Just here to say that I am very sorry about your diagnosis of lupus.

    I have read alot about lupus and there are so many new treatments for it. Alot of times, it does not even progress to any organs, so try not to worry to much.

    Find a good support group, there are many good sites around that are very supportive. My ANA is positive, so I have traveled to these sites.

    You have helped me much in the past, I hope that this has helped you too.

    I will be thinking of you, keep your head up!! Everything will be OK.

    Love and prayers,

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