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angelasmom (@angelasmom)

Livedoid vasculopathy

Blood Cancers & Disorders | Last Active: 2 days ago | Replies (227)

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@angelasmom

Hi Spence I take it you have Livedoid Vasculopathy/Vasculitis? Do you
recall the name of the disorder your Dr was testing for or the name of the
test? Thank you.

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Replies to "Hi Spence I take it you have Livedoid Vasculopathy/Vasculitis? Do you recall the name of the..."

I'm wondering if this thread or another is still active. I've been checking on Mayo sites, but have found nothing. Thank you.

Are Livedoid Vasculopathy and Vasculitis the same? I was diagnosed with LV after 7 years of not knowing what was happening to me…skin grafts that didn't take, stripped veins and so many Drs. all saying it was not vascular…until one day 7/8yrs ago and after 2 years of serious ulceration and excruciating pain I begged to see a surgeon. Not sure why, but that surgeon is the one who said "I think you have been mis-diagnosed" and he did a live biopsy and sent it right here to the Mayo Clinic. It came back positive for LV and I was put on Trental immediately and within 6 months was back in remission. ( Both feet- one on the top of my foot and both ankles on the other) I have had several flare ups and currently in another very painful bout which has so far been 11 months and both feet again. I live in Canada and my Dr. says the only medication they can give me and the best one is Trental. I have been at this for over 15 years now and even knowing what is happening and what to expect I think the pain is wearing me down after 11 months. It is a lonely fight as it is rare so I am happy to have this connection and will check out the other you mentioned. Thank you so much angelasmom for helping so many out.

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