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  • Doubting diagnosis...

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    Old 03-07-2007, 01:43 PM   #1
    Donte
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    Doubting diagnosis...

    Hello All,

    I'm really beginning to doubt my diagnosis lately (back and forth from lupus to RA). A quick summary - In 2003 I began having terrible joint and muscle pain. I could barely get out of bed. I had rashes, headaches, and severe fatigue. When I first went to my rheumy, my blood work was normal, but then after about the third time, I began having a positive low titre ANA for about a year. RF has ALWAYS been negative. I usually have high wbc and a lot of times I've had elevated liver enzymes and high monocytes. None of the other lupus specific tests have ever been positive. I got pregnant in October of 2005 after going off of Methotrexate. Everything was fine in the beginning and actually I felt better than I had in years (sign of RA). I started having swelling early on around the 14th week and my liver enzymes were elevated. Then, in April of 06 when I was six months pregnant, not only my liver enzymes were elevated, but my sed rate was high, my wbc was very high, and my rbc was very low. I was having some joint pain, so I started on 10mg prednisone daily (safe for fetus). Everything was fine except for severe swelling. I delivered my baby daughter in July, but a week later I became extremely ill and was hospitalized for postpartum preeclampsia (a complication in mom's with lupus). I was treated and released after a week. Then, from July through January 07, I have had no lupus/ra symptoms at all and have been off of all medications completely, until recently I started having joint pain and fatigue again and a rash on my forearms that burns. I went to my rheumy and he said that it's my disease (which one?) and he did blood work, bone density test and an MRI of my hands and wrists. I just got my results back today and the MRI shows no new damage to my joints at all, bone density is fine and ALL of my blood work is perfectly normal. He says that I have "mild" disease and that mine doesn't always show up in the blood work, but that doesn't mean that I won't have symptoms. He said he wanted me to start Plaquenil again after my eye exam.

    Forget trying to figure out which disease I truly have; lupus or RA; I just want to know if I really have anything wrong at all. I'm starting to think that I don't and that sometimes people can just have these type of symptoms with age or stress or something. I'm confused and frustrated because I don't want to take medicines that I don't really need, but on the other hand, I know that my pain is real and my fatigue is real and I want to avoid it from returning. So, even with a diagnosis (or two), I don't feel satisfied that I know what's going on with my body. I used to always think "just give me a diagnosis for how I feel and I will feel a bit better just knowing what it is", but now, I don't even trust that.

    Is anyone going through the same situation or similar? If so, please write back and tell me how your handling it.

    Thanks - Donna

     
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    Old 03-14-2007, 12:14 PM   #2
    Kel123
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    Re: Doubting diagnosis...

    Hi Donna,

    Your story reminds me so much of my own. I am having an awful time today and appear to be in a a flare of some kind also. I started having severe arthritis 2 weeks after the birth of my first daughter in 2001. I could barely walk up and down the stairs, my knees were swollen, and my hands, and wrists were so inflamed and sore that I could not even snap up the crotch of my newborns clothes. I thought it was just something post partum so I pretty much ignored it until my 6 week post partum visit. I told my ob about it, and he drew an RA panel, and an ANA. My Ana came back 1280, and my RA negative. I was referred to a rheumatologist. I also developed a huge very itchy and burning rash all over my breasts (I was nursing), lower abdomen, thighs, and arms. I had only a little bit of the rash at appt time. It lasted about 4 weeks. My doctor drew all the Lupus bloodwork, complement protein tests, srjons disease--you name it. I have never had bone density tests or MRI's done. Everything came back negative. Oh, I also had a blood clot in my leg during my pregnancy ( and 2 others in my 2 other pregnancies) Like you, when I was pregnant the other 2 times, I went into complete remission from this unknown disease--I felt great, until after the birth when it would flare again. I have definite periods of feeling fine, and normal and go into denial that there is nothing wrong with me. Then, I have a flare, and i want to crawl into a hole! I also have the intense all over bone and muscle fatigue that no one understands. my hands and fingers, and thumbs are swollen in the mornings and very sore and stiff. Sometimes my knees, elbows, hips and ankles are affected, but most times it is just my wrists and hands/fingers. My ANA always comes back very high, my Lupus always Negative, my RA always Negative. I also sometimes have tingling in my fingers, with numbness. I called this morning and made an appt with a new rheumatologist. My old Dr. wanted me to go on Plaquenil and I refused because I was nursing and or planning on another baby. I never had problems during my pregnancies like you except the clots. I have had that weird hive-looking rash 3 times with no known cause and never could get into the Derm to get it biopsied. My old dr. finally classified me as either sero-negative lupus or ser-negative RA although he was leaning more towards RA (in the beginning it was lupus) he basically says that because I am symptomatic, I have an undifferentiated auto immune disorder--GREAT!! Hopefully, this new rheumy can help me and start from scratch again. I am done having babies now so am willing to get on some sort of medicine to help me. I take 800 mgs of Ibupfofen during bad flares but it doesn't help much. I have taken every over the counter pain med with no relief. For me a really hot shower or bath helps most, and stress kills me! I am 8 weeks post of from having rectal surgery and I think that is why I am so sore these days. Thanks for listening, sorry about the long post, but I wanted you to know that your not alone. Can you tell me if the plaquenil helped you?? Did you have any side effects from it? It scares me, but I need some sort of relief. I am going to demand bone scans from this new Dr.
    Kelley

     
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    Old 03-30-2007, 06:36 PM   #3
    lori.bret
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    Re: Doubting diagnosis...

    Hi Donna, I just had a quick question for you about your rash that you said you had. What did it look like? I recently had a rash that was extremely itch and it simply looked as if I had a bad sunburn. It was just really red and itchy.And it was all over--basically from head to toe. I was barely able to sleep because the itching would drive me nuts and I was scratching so bad I was amost ready to draw blood. I do have arthritis and DDD, and I am severely allergic to aspirin. I am also using metoprolol for my heart. Ive never had chicken pox, ever. I have also broken out in the past with hives due to some allergies, but with this rash, it looked different and I havent recently changed a single thing about my life, meds or diet so i couldnt figure out what the deal was with this rash that just seemed to appear out of nowhere.
    Thanks
    Lori

     
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