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Vasculitis??

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Rubylove
Rubylove

I need some help. I have been very sick since November, Tired, confused, low ferritin ( colonoscopy and positive polyps removed ) headache, poor vision .Nauseous 

I have terrible lesions on my arms that keep arreing .They are mildly itchy and are getting worse , I have had a few on my legs.

I am also feeling nauseous and so confused and have a constant headache. My vision is also rapidly worse.

 I am ANCA negative,my C3 is borderline but other routine blood work are fine. I have a High Calprotectin and tested high for Von Willebrand disease. 

My doctor did a skin biopsy the other day.  I am hopeful this will bring some resolution.

 I have seen two Doctors, two in the clinic and one Rheumatologist, they seems to think  this is a anomaly and it will pass. One of my doctors is great, he feels it might be Vasculitis but does not know much about it and because of my lack of ANCA is confused . I am getting worse sad 

Any suggestions?

 

1 like, 3 replies

3 Replies

  • Bobo15661
    Bobo15661 Rubylove

    Posted

    Ruby, I'm not a doctor.  I was diagnosed with vasculitis two years ago.  For me, the red spots starts from my feet/legs and they run upward toward my upper chest.  The spot do not cause me any discomfort, no pain, and they do not itch.  My spots eventually went away by itself in about 5-6 weeks.  During this time, I get random chest pain, kidney pain, shoulder pain, etc  On my left room, the red spot was so dense, I can barely walk with that foot.   

    I too saw Rheumatologist.  The doctor gave me a pack of steroids in case it flares up again.  Luckily, I don't have to use it.

    I'm happy to share more information if you need.  Good luck and take care.

    • Rubylove
      Rubylove Bobo15661

      Posted

      Thank you !

      I have just returned from my Doc, and they lost my biopsy sad 

      I am feeling very defeated 

      I get the spots every few weeks so will have to wait till it happens gain

      The worst is the confusion and nausea 

      In the meantime I have been given a test dose of prednisone to see if it helps 

      Fingers crossed! 

  • Bobo15661
    Bobo15661 Rubylove

    Posted

    Ruby, I did not experienced any nausea during the course of my 5-6 weeks of red spots.  Just moving chest pain as I'm worry the disease is attacking my heart, lungs, etc.  I got really luck as the pain only last about 2 days per location.  And also glad all checked out fine.

    It's horrible that they lost the biopsy.  The doctor also took mine and I understand how it feels to cut another piece and wait again.

    Looking back with all these pain I experienced during this 5-6 weeks, the pain is no where close to what I'm experiecning now.  Got a kidney stone for almost 4 weeks, its not moving.  

    Wish you the best of luck.  

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