Hey everyone I was diagnosed last week with vasculitis from a biopsy it s in...

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  • I live in nassau county, Long Island

  • Those marks will only get worse and started at my feet and moved up my body until they got it under control

  • Kristina, I googled rheumatologist's Vasculitis New York and came up with several hits. I live in Tecas and have never been to New York, but I think there are several hospitals in NYC doing research. Also there us a Long Island support group. You can call Gertrude Frein at 631.757.2103. Caprunner2@optonline.net or Rachel LeGris 631.335.0979 legriseve@yahoo.com. Good luck.

  • Thanks so much Karen. I found a bunch in the city, that's just so out of the way for me. I guess I can't be too picky, right? Lol I will call those #s!

  • I know what you mean. I live in a large metro area and don't like to drive far. I even gate to go downtown because of the traffic, but we have it easy because we live where there are specialists nearby. Many vascies have to drive hundreds if mikes to see their specialists and/or get treatments. This is such a serious disease that we can't be too picky about where we go. It sounds like your doctors are sincere, but just don't know how to treat you.

  • Sorry about the typos. My fingers are too fat!

  • Lol I just need some straight answers. I don't know which type I have or anything yet. I'll hobble my way over to the city lol

  • Xxxxxxx Yzzzzzz I live in Nassau county also and I love Winthrop's rheumatology team.

  • I have central nervous system vasculitis of the brain and try my hardest to avoid anything that has GMO. I am in a flare and am going for cytoxan infusions once a month. It does alter your life. Yet, listen to your body and do not push yourself. I use to run all the time and was very active. Your health comes first before you can take on a hiking trip down and up the Grand Canyon.

  • Xxxxxxx Yzzzzzz thanks!! Do they specialize in vasculitis?? I eat mostly organic, mostly GF and dairy free. I was super excited for the Grand Canyon, still am but I hope my leg can handle it!!!