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    Old 10-29-2013, 07:46 AM   #1
    Beyond Blessed
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    Do I have Lupus?

    Hey Everyone-

    I'm new and desperately trying to figure things out! I'll try to sum up my story so it's not too long, but I would love your thoughts!

    I have been in serious pain through out my body for years but it's been getting progressively intense to a point that I barely sleep at night-2 months after Meniscus Surgery my knee started hurting again and has become consistently less mobile. I have been in pt for 7 weeks, on one crutch, in knee brace and have had several injections all with no response. Meanwhile, I've had a serious flare-up of some kind since last December-I ended up having an Endometrial Ablation because my periods were severely heavy and out of control. Although I've had migraines since age 18, since last year I've been in hospital 3 times with worse migraines ever-the butterfly rash that they call Rosacae has been out of control-3 doses of antibiotics haven't cleared it-I cant go in the sun at all-I've had the rash for about 5 years-I just had chalazion surgery-I get pains in my chest on the left side-especially when I roll to the left-my hair fell out in chunks last year-still falls out but not as bad--my TMJ is out of control-if you look at my history-I've had a lot of unexplained things happen--like a blocked ureter-seemingly out of the blue-carpel tunnel-gallbladder removed-the list goes on--Ive been anemic with no explanation since age 16-I've been very very low on Vit. D through out the years--

    So last week-after the third time a vein spontaneously burst in my hand-they decided to do all kinds of testing and I was finally diagnosed with Hashimitos Disease-even tho I went to a Endo last spring and she said my blood work was fine. Now, after going to 2 Orthopedic Doctors for my knee, a Hematologist and a Rheumatologist--they think my knee problems are autoimmune related. My blood work came out negative for Lupus, but I have so many symptoms he started me on a Prednisone Burst today and if that shows any promise he wants to put me on Paquinel next week. He said sometimes it takes a long time for Lupus to show in blood work.

    Any thoughts, suggestions, ideas?? I would truly appreciate it! Hope you all are having a blessed day!

     
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    Old 10-29-2013, 08:28 AM   #2
    ladybud
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    Re: Do I have Lupus?

    Welcome! I read your story with angst, as it sounds so familiar to mine and many others. I think your Dr. is on the right track with this plan, and my bet is, the Prednisone will help in 1-2 days, to confirm his theory. You have many symptoms and lots of history suggestive of lupus, and it is true that sometimes the blood test evidence of it takes years to show up. Mine took 10 years after I had ongoing symptoms. It is just too bad it has taken so long for any of your health care providers to recognize it. If you look at the sticky posts at the top of the lupus board and review the ACR and alternative criteria for lupus, you will see many of your symptoms there. Even the bursting blood vessels in hand (not on lists) can be a manifestation of it from vasculitis and weak connective tissue. The good news, is that now you can get on some specific treatment for it and get this under control, feel better, and have a better quality of life. This will all take time of course, and will require ongoing medication, monitoring, etc, but will be well worth it when you feel better. A diagnosis can be achieved through a skin biopsy frequently, as long as immunofluorescent studies are done with the biopsy. I hope you are on the road to success and better health! Glad you posted here.

     
    Old 10-29-2013, 11:45 AM   #3
    Beyond Blessed
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    Re: Do I have Lupus?

    Thank you for your response Ladybug. It was nice to hear from you. I hope you are doing well

     
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