Does anyone know where I can go in the U.S.? For Urticarial vasculitis?

I have been sick for a long time. Was told I had UV just this past June. Before that it sounds like a lot of other stories I have read. I was diagnosed with eczema. Than Lyme Disease. Than celiac spru. And finally UV. Now I am being treated at one of the most respectable places in the world but they don't seam to know squat about vasculitis. I was wondering about Johns Hopkins? I live in Minnesota which is on the border of Canada about in the middle of the nation. Any help would be appreciated

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  • Is it normal to be seen by a Dermatologist I keep thinking I should see a Rhuemy. Is there anyway to see a doctor over their with U.S. insurance? I am told by the doctors that pain is usually not a symptom of UV. But I feel terrible and hurt all the time and the web always lists it as a symptom. My breathing diffulcties are dismissed as something else.

  • Also how long do i have to battle this enemy? The ups and downs and doctors that act like my symptoms are no big deal. Does not effect them in the least. Mean time I am having money trouble with missing work for sick and appointments. The whole thing makes me feel like giving up.

  • Hey,

    there is a facebook group for patient with UV. There are a lot of the US, you can ask them.

    facebook.com/?ref=home#!/gr...

  • If you go to this web address there are the names of Vasculitis doctors in various parts of the world. Click on the names until you find one which is nearest to you. Hope that helps.

    vasculitisfoundation.org/ma...[102]=102

    PatriciaAnn

  • Hi!

    Sorry to read that you are going through a bad time.

    Don't know if this will help but how about trying the vasculitis centre at the Mayo Clinic in Rochester? Perhaps not too far to go, it being in southern Minnesota. They have an excellent reputation for patient care and research. The website link with the contact details is: rarediseasesnetwork.epi.usf...

  • Just tried the hyperlink I listed above, no joy, so try: mayoclinic.org/rochester

    Good luck!

  • Jim Bornac is a member of the Vuk/HealthUnlocked Community if you private message him here, he might be able to help :-) Sorry you having such a bad time. I have messaged him on fb so hopefully he will be in touch very soon.

  • For the link I gave earlier, once on the page look for where it says "Member type" and then click on "VF Medical Consultants".

    PatriciaAnn

  • Thanks everybody. I am going to the Mayo right now but the doctors there deny there is a vasculitis center at the mayo. Even though I can find them on the web.

  • Life is never easy for anyone who has any type of vasculitis, is it? Whether you live in the US or the UK :-(. Let us know how things go.

  • Hi George!

    I wondered if you were at the Mayo already. It does say on their website that they have a vasculitis clinic in the rheumatology department, and I know they have vasculitis research programs but if they are saying no, then you may need to investigate further.

    I did google 'vasculitis minnesota' and there seem to be some useful links there, particularly, 'doctors in minnesota who treat or diagnose vasculitis' and, perhaps best of all, you could try vasculitisfoundation.org/va...

    There are also support groups listed who can be a good source of information, as well as support.

    From what you say, it sounds like you would benefit from a thorough diagnostic examination to reliably identify just what type of vasculitis you have and thus get appropriate treatment. Only then will you start to feel better!

    I do hope things improve quickly. Let us know how things go.

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