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Old 05-08-2012, 01:18 AM   #1
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autoimmune disorder but docs not sure?

hi everyone..i am new here and looking for help and also would like to give help if i can..2 years ago it started with pain behind my eye they felt like they where on fire..then a few days later i started with fever and sweats....that lasted for a week so went to my docs...the day of my appointment i started to get pain shooting up my legs..and then red bloches started to appear also..then i started to get a ulcer in my vagina...the docs said i had herpes...which was not true...the ulcers are not std related at all....i was sent hope with anti viral tablets...2 days after that i couldnt walk the pain in my knees and ankles where so bad i needed help in getting up and down and walking...i had more tests and still no answers..at the time i had a positive ana..so they think something imflamation??? i was retested a week ago and the ana is still positive..i am always tired and still get joint pain and my vaginal area is still very raw and sensitive..i am trying to get pregnant but because of this problem sex is hard to do...i seem to get sick around ovulation and my period..does anyone know what this could be???
thats for reading

 
Old 05-08-2012, 10:09 AM   #2
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Re: autoimmune disorder but docs not sure?

do You know what your ana titre and pattern are? Were you tested for any of the Herpes viruses? Did they test for any other antibodies and your sed rate or CRP? These are clues that might lead a Dr to suspect an autoimmune process going on. What did the blotches look like? Where or how were they dispersed? Do you still get rashes? Are you sun sensitive? Autoimmune diseases can be difficult to diagnose as they often have very vague symptoms, but the answers to the above questions can sometimes point in a direction.

 
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Old 05-08-2012, 06:42 PM   #3
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Re: autoimmune disorder but docs not sure?

i have had soooo many tests...im not really sure which ones they have done.all they do is say everything came back normal??...the bloches where the size of a fist and only had them on my calfs..they didnt hurt i wouldnt even know they where there....i now get what looks like a blind pimple they come up all over my body and different times...they stay for about a week and then dissapear....the blood test did come back positive to herpes but when the ulcers where oozing stuff...sorry to much info!! the swab they did was negative??? also a gyno looked at them and she said straight away they did not look like herpes...im pretty good with the sun no probs there...thank you very much for your help...i hope to get an answer soon...

 
Old 05-09-2012, 07:11 AM   #4
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Re: autoimmune disorder but docs not sure?

If I were you, I'd take a picture of your rashes and check with a dermatologist. I would also check the stickies the kind folks over on the Lupus board have put up. Good luck and I hope you start feeling better and get some answers soon!

 
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Old 05-11-2012, 03:21 PM   #5
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Re: autoimmune disorder but docs not sure?

I bet it's BehÁet's. I know you have genital ulcers and skin lesions but do you get oral ulcers too? Uveitis (inflammation of the eye)?

It's so rare that it's not on the daily radar and doctors could easily confuse it for "weird herpes."

 
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Old 05-15-2012, 07:43 PM   #6
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Re: autoimmune disorder but docs not sure?

yes!!..i have had a natual healer say that...i think i may need to tell the docs to test that for me..i think it is vey hard to test for...thanks for your reply

 
Old 05-24-2012, 03:06 PM   #7
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Re: autoimmune disorder but docs not sure?

Hello and I am so sorry to hear you are going through such a tough times.
I would agree with someone who mentioned Behcet's Syndrome. I am not a DR but just by reading what you wrote and your symptoms, leads me to think this can be it. I just dont get it, so many doctors saw you and cant test you for this condition?
Meanwhile, test is very simple, it called Pathergy skin test. In 36 hr you get your results. They also may do skin biopsy if needed and MRI for your brain just to make sure if this is it and how far it affected your body.
I don't want to scare you, but you must do a lot of work and be on top of things. This condition may be very dangerous so please do yourself a favor and go and see good doctors. This is not a joke.

Please let us know if you be testing on BS.
Moldova

 
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