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Thread: I'm still waiting for my diagnosis....

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    Default I'm still waiting for my diagnosis....

    Hello all, I don't have a lupus diagnosis yet, but I have many symptoms with conflicting test results. I have had a large rash on my right hip for nearly two years. My family doctor treated it with anti-fungal creams for a year than referred me to a dermatologist. She told me she thought it looked like a lupus rash. My other symptoms are fatigue, joint pain, blood in my urine for over two years, difficulty sleeping, and other things I don't know if they are related to lupus. I am 51 years old, ANA tests was 1:640 homogeneous, ENA negative and DNA negative. My first skin biopsy was positive for a "broad spectrum of connective tissue disorders" and I don't have the second biopsy results back yet. Tomorrow I am going to get an ultrasound on my kidneys. I have only seen my family doctor and the dermatologist. The dermatologist said we would retest in 6 months and then if needed refer me to a rheumatologist. I am tired of feeling like a hypochondriac! Is it possible to have lupus but not have a positive ENA? Thank you in advance for answering my questions.

    Wendy in SC

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    Hi Wendy. I'm new to this site myself. My lupus diagnosis came from my symptoms. My blood results came back normal. I to had to see a rheumatologist. This is where i got the lupus diagnosis. So if you go there you will be in the right place as they deal with lupus. I no its hard feeling so unwell all of the time. I hope you soon get some answers to your questions. Sorry I can not be more helpful. I Myself am new to lupus so still trying to get to grips with it myself. Try to keep smiling .

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    Hi Wendy,
    I hope they're able to sort you out quickly and once your with rheumatology they do runs some tests.
    I'm with Dermatology like yourself and the skin troubles i have like yourself are terrible but the creams only last so long, so i see him for SLE and his client in Rheumatology where i've had no end of blood tests and are still awaiting more results.

    I do wish you all the very best Terri xxx
    Last edited by Peridot_Gem; 11-14-2010 at 05:11 AM.

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    I don't know if you know how lucky you are Sue. So many doctors refuse to diagnose without the blood tests. There are tons of us on this board that have all the symptoms and have had some of the test results at one time or another but because they fluctuate the doctors refuse to give a firm diagnosis. I am so glad that you found a wonderful doctor Sue. Don't forget that we are here for both of you
    Mari

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    Quote Originally Posted by tgal View Post
    I don't know if you know how lucky you are Sue. So many doctors refuse to diagnose without the blood tests. There are tons of us on this board that have all the symptoms and have had some of the test results at one time or another but because they fluctuate the doctors refuse to give a firm diagnosis. I am so glad that you found a wonderful doctor Sue. Don't forget that we are here for both of you
    Hi tgal,
    That's how i've only just found out i have anemia now because of fluctuations on blood tests because they reckon my blood showed i was one and within a minute of checking again it went otherwise, it just makes me wonder what causes the blood to do this??

    Love Terri xxx

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    Hi tgal. Your right. Until coming on this site i did not realise just how many people have to wait to get a diagnoses due to bloods being normal. I'm starting on plaquenil next month. I know it might take a while to quick and that the side affects are not fun. But if it brings even a little relief i shall be a happy bunny. I think the only thing that worked in my favour is that my sister has lupus and that her bloods came back normal for a while. Thank you for your kind words. look forwad to chatting to you. Sue

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    Default Thanks for your encouragement Sue

    I'm sorry that I haven't gotten back to thank you for your post the other day. My mother-in-law was discharged from the hospital and went to her doctor's appointment and ended up back in the ER on Friday. She actually was in the ER until Saturday night when they finally put her in a room. I had my ultrasound on my kidneys on Friday and will find out the results later this week. I wish when I first developed the rash and lost 35 pounds that I had gone to see a rheumatologist then. Maybe I would know by now what is going on. Sue, I never thought that a doctor would give a diagnosis of lupus without the blood work, what a kind per he/she must be. Thank you for your encouraging words.

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    Quote Originally Posted by sue27 View Post
    Hi tgal. Your right. Until coming on this site i did not realise just how many people have to wait to get a diagnoses due to bloods being normal. I'm starting on plaquenil next month. I know it might take a while to quick and that the side affects are not fun. But if it brings even a little relief i shall be a happy bunny. I think the only thing that worked in my favour is that my sister has lupus and that her bloods came back normal for a while. Thank you for your kind words. look forwad to chatting to you. Sue
    FYI... I had no side effects from the plaquenil. The first three months I thought I was wasting my money though LOL. About 4 and a half months it I realized that I hadn't had a rash for awhile and that my joints were a bit better. I know some people have upset stomachs and such but for me it was never a problem. I hope the same for you

    @ Wendy... Because Lupus is such a tricky disease and because our labs can fluctuate GOOD doctors will diagnose while looking at the whole picture and not diagnose or disqualify based solely on the labs. Sad part is that those are few and far between. Don't beat yourself up for waiting Wendy. Chances are even if you had gone then you would still be waiting. Many people fight for years to get a diagnosis. Just stay focused and remember that you know your body best. the doctors answer to you. You hire them and you can fire them. Get answers when you have questions. Most of all remember that we are here for you
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Wendy (11-15-2010)

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