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Thread: Newly diagnosed and scared

  1. #21
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    Default Re: Newly diagnosed and scared

    Thank you so much for the 2018 information on Vanderbilt’s Vasculitis Clinic. Hopefully my son and I may seek out an appt. with Dr. Byram. A major problem so far is that Vanderbilt Rheumatology will not allow us to see another Rheumatologist other than the one we have originally seen there. It is a policy from the dark ages and the person we’ve seen has had zero ability to diagnose relapses even when they are severe, life-threatening and clearly diagnosed and treated by other (non-Vanderbilt) Rheumatologists. Any advice any of you have for this situation would be appreciated.

  2. #22
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    Default Re: Newly diagnosed and scared

    Hey-
    If you can get to the John Hopkins Foundation in Cleveland, Ohio that might be better than flying to California. You will find in Cleveland they "KNOW" the disease and have top notch doctors. Im in Indiana and my Rheumatologist suggested if I feel I need to go anywhere that would be the place to go. But I have some good doctors in Indianapolis. My fiancé is a nurse and helps a lot with "coordinating" all the doctors and tests and ensuring all doctors are on the same page. I was told in the beginning 11/2018 I was a "severe" case and I had multi organ attack.....it is a life adjustment and a challenge in the beginning and one day at a time and focus on how you feel.....you know your body. Im currently receiving dialysis and just this week I was told by my Nephrologist I could skip a day and see how my body does/feels. Im not in remission and have 2 more Cytoxan infusions to complete before I go on a maintenance dose. I could go on........ I love this forum as it helps me to realize I am not alone and share a lot of what others feel. My Pulmonologist said Weggies is totally under diagnosed- When I seen my Rheumatologist on Monday and told her about this forum she wanted to know all I learned and we work together as a team, but as I mentioned she told me to ONLY read from John Hopkins site about the disease so that I get accurate information. Wish you well and post your journey as you never know who it might help and thats a goal of mine to educate others about this disease and maybe the doctors and (insurance companies) will someday have a cure or get better at "approving" the darn drugs that save a persons LIFE.

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  4. #23
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    Default Re: Newly diagnosed and scared

    @Matt: Small correction here—Johns Hopkins is in Baltimore. They have good expertise with vasculitis. Cleveland Clinic is probably #2 at treating vasculitis after Mayo Clinic.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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