whats going on why is this so difficault.

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Hi everyone,

So I saw my doc he said I have severe vasculitis and sent me to have the Ana tests and all those that go with it however I called for my results and they are all normal! So does this mean I don't have It or what ? Will the rheuomotologist still see me even if the results came back normal? I've never been so disappointed as now it just seems like I'm chatting rubbish when I literally feel like I'm in an 90 year old body I'm only mid 20s. X

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7 Replies

  • Posted

    That's difficult to answer as there are many things that it could be if not vasculitis.....I find it strange that your doctor should say that you have severe vasculitis without getting the tests done first....

    Can I ask what symptoms you have ? 

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    • Posted

      I showed my doctor a picture of my fingers and foot my fingers where bright red swollen and my toes some where white and some dark purple with pain and numbness. I also have dry patches of itchy skin face arms legs back.

      I have bad migraines which my right arm and leg goes numb I almost fell down the stairs. I have deep bone and joint pains every day non stop worsens at night. My vision is blurry gets worse as the day goes on. My periods have become irregular. I have hot flushes alot. My glands are always swollen. My knee right one is crocked inward and my ribs are flared and slight spine curvature. My hearing I terrible. In the past I had bells paulsy unexplained to y it happened also hospitilised twice with full body hives again no answer as to why. I have mental health issues. Everyone thinks its all in my head but to be honest I feel like an old women in only young and now since these test come back normal I'm stuck once again.

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  • Posted

    Sorry to hear all your problems.......I'm not a Doctor but it sounds like you may have more than one thing going on, has your Doctor ran tests for RA Rheumatoid Arthritis, ESR and CRP ? - these detect inflammation in your body

    I assume from your previous mail he ran not only ANA, but pANA and cANA ? - I think these are specific for vasculitis

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    • Posted

      Thanks for your reply Phil, he done ANA , ANCA , T something. RA factor and bone profile all come back normal. I just feel I'm at a dead end in wondering if my doctor refers me in Jan to rheumotology if they will re do the tests but I guess its unlikely.

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  • Posted

    TSH and T4L - thyroid function tests......Lets hope he does as the Specialist referral will be more beneficial....good luck.....

    I have vaculitis and have a whole host of tests run every couple of months...... 

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    • Posted

      Thank you for your help! Today my tounge is bleeding all this is no good for anxiety ! I'm sorry you have vasculitis its a very complex disease as I've been learning! Happy you have a diagnosis and are being looked after!

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  • Posted

    Its ok I have had this twice.....PAN when I was 21yrs old and GPA when I was 51yrs and just take tablets to control it....although I have relapsed twice I reckon I will be on tablets long term.....I'm not too worried I know I have to just get one with it......

    You are right though once you have a diagnosis you will be able to manage it better....

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