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Recently diagnosed with vasculitis, waiting on Dr appointment for more information about my diagnosi

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Katie.Elise
Katie.Elise

My symptoms started about 4 months ago with severe itching on my hands and feet, after two weeks of that the hives started. My Dr referred me to an allergist who diagnosed me with chronic hives, after about 8 weeks with no releif I went in for bloodwork and biopsy. Bloodwork came back totally normal but the biopsy showed vasculitis. I've been referred to a dermatologist and am waiting for that appointment to be scheduled, in the meantime I've been doing research and have been growing more and more anxious for answers. I'm curious about how I would find out if other organs besides my skin are affected, would that have shown up in my bloodwork? I do get headaches, chest pain and am always coughing but I have had athsma most my life so it's likely related to that. My hands and feet are always cold and I have had digestive issues for years. Definitely no scary symptoms like coughing up blood or blood in my urine.am I going to have to see more doctors after the dermatologist? And does anyone know of anti inflammatory diet having an effect on this condition? I'm also curious about if it can spread...so if it does turn out to only be in my skin do I need to worry about it eventually moving to other organs. Any info would be greatly appreciated, I've Googled all this but can't seem to find any answers

0 likes, 8 replies

8 Replies

  • dave170448
    dave170448 Katie.Elise

    Posted

    Hello Katie

    Sorry you are suffering. Where are you based? If a medic suspects you have Vasculitis then you need to be referred to a Rheumatologist NOT a Dermatologist. The blood test that identifies Vasculitis is called C Anca. Vasculitis is a rare condition and statistics show that most Doctors may only see one case in their entire career - so it's hard for them to diagnose. I can help further if you let me know which country you are in.

    Chin up!

    Dave (diagnosed 16 years ago)

    .

    • Katie.Elise
      Katie.Elise dave170448

      Posted

      Hi Dave,

      Thanks for the reply, I'm in the US, southern utah. So the biopsy would not confirm the diagnosis?

    • dave170448
      dave170448 Katie.Elise

      Posted

      Hi Katie

      Tricky one. As Wegeners can affect so many areas of the body then I believe that biopsies can be used to assist diagnosis.However, the C Anca test is normally used when multiple symptoms are present. You should try and find a doctor with experience of the disease. Visit http://www.vasculitisfoundation.org/ they are the US support organisation and may be able to guide you to someone near you?

      Good luck and let me know how you get on

      Dave

    • dave170448
      dave170448 rocky31676

      Posted

      Actually, a biopsy is not the only confirmation. The ANCA blood test is the accepted diagnosis method

    • rocky31676
      rocky31676 dave170448

      Posted

      ANCA is for Autoimmune disorder in general, because there are 2 types of ANCA test, cANCA and pANCA.  

      Biopsy is specific for LCV (hypersensitivity vasculitis, also called HSP). 

  • michelle43915
    michelle43915 Katie.Elise

    Posted

    I know it is scarey but you must try not to worry and take action.  With Vasculitis worry/stress makes it worse.  There are so many types of Vasculitis.  I agree with Dave you should be seeing a Rheumatologist or a Vasculitis Specialist Clinc, there are a few in UK.  A fantastic source of information is Vasculitis UK, they have a free help-line too manned with volunteers who can perhaps give you good information etc. 

    Has your dermatologist taken a biopsy?  She should do. 

    As for your fears of how they can tell if your organs are affected its CT and MRI/PET scans. Testing your Urine too to see if there is any blood in it.  You can be ANCA positive or negative, but if you are on steriods it does not always show, however, my best advice is to ask to be referred to a Rheumatologist of a Vasculitis Clinic.  There is food that can take down the inflamation, but you have not been diagnosed with what kind yet.  I have a rare kind of vasculitis and the foods make it worse.  I know it is scary, really scary, having asthma and coughing too. I have had this, gut issues too, but there are so many kinds of Vasculitis, even Parkinson's is a form of Vasculitis and psorarsis.  So if I were you I would speak to one of the Vasculitis Help Lines.  I don't know which country you are in? There is Vasculitis UK and also one in USA/Canada.  They will give you information as to what consultants there are for this condition etc.

    Most of the treatment starts with steriods, steriods normally keep it at bay.  Please keep in touch and tell us how you get on.  Hope everything works out fine for you. 

  • Tarkus
    Tarkus Katie.Elise

    Posted

    Hi there, im really sorry to read that you suffer from this disease, ive been diagnosed about 3 months ago with Buergers disease, im a pack a day smoker and after a vacation trip i started feeling my hands itch, at first i thought it was some kind of allergic reaction to some bug bite or something but then the itch and pain start to spread to other fingers and the palm of my hand i tried Allegra for the allegric reaction i thoiught i had but the next morning my other hand started to itch, i went to the hospital and got very lucky cause i found this vascular surgeon (the only one in my country) who in a matter of 20 miin came with the diagnosis, she is amazing, she gave me Dexketoprofen trometamol (Enantyum) for the swolen and the pain and she also gave me Cilostazol a vasodilator that works by relaxing the muscles in your blood vessels to help them dilate (widen) in a matter of a week i was symptoms free. The bad is that im a bit stuborn on quitting smoke but after reading all the risks that Buergers has im thinking very seriously to start quitting, im not sure how im gonna do it but i will. I discover this forum and find some info from a guy in the US who is the best treating hard cases of Buergers, i hope this help you: 

    the top guy in the US who can help you is Peter A. Merkel, MD, MPHChief, Division of Rheumatology

    Professor of Medicine, Professor of Epidemiology in Biostatistics and Epidemiology. Call 800-789-PENN (7366)

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