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Thread: Journey to being diagnosed, treated, and already first flare up

  1. #11
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    Default Re: Journey to being diagnosed, treated, and already first flare up

    Quote Originally Posted by Masha View Post
    Onirin,
    You sure have had a long miserable journey before being diagnosed. I am glad you found us.
    There are many who can relate to all if not some of your experiences.
    Like Natie, my anca always reads positive. There are times it reads positive and I feel good. My doctors continue to tell me that anca is not the only determination for where I am with this condition.
    This brings me to your situation, and others whose anca has read negative. Why do doctors continue to say “No Canca, no GPA”
    I sound like a broken record, but I will say it again. Do not see just any rheumatologist. If you live in an area where it is possible to find one that is experienced with Wegeners, then by all means go to that doctor.
    If you care to share the part of the country where you live, others will help you. Many members go to the Cleveland Clinic and see a wonderful doctor, Dr. Villa Forte. I live in the Charlotte NC area and drive a few hours to go to Duke for a specialist.
    Please don’t hesitate to reach out to us.
    Masha
    Hi Marsha,
    I read you are going to Duke to get treatment. My rheumatologist is from Greenville, SC. My ENT referred me to him. A friend asked me if I wanted to see someone from Duke, but I have not made up my mind on that yet. What is your experience with Duke?

  2. #12
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    Feb 2018
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    Default Re: Journey to being diagnosed, treated, and already first flare up

    It has been excellent. I see Dr. Nancy Allen. She has been researching, teaching classes and treating Wegeners for thirty years. If I have any questions, she responds through the portal immediately. She orders all blood tests, analyzes and sends me a thorough explanation on each one. I am able to receive my Rituxan infusions and blood tests in between in Charlotte. During visits she doesn’t leave the room until I feel everything was explained and all my questions asked and answered. Now for the bad part. My last visit with her will be in March. She is retiring. I am guessing she will introduce me to my new doctor at that time. Normally I make my next appointment with the scheduler, but during my last appointment Dr. Allen designated the date and time she will see me. I will certainly pass on the name of my new doctor.
    I personally know four people who go to Duke, all for different things. In one case, the man had cancer. His daughter is a physician here in Charlotte. She made immediate arrangements for him to go to Duke. As I write this he and his wife are enjoying a fabulous vacation in Rome!
    Masha

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  4. #13
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    Oct 2017
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    Default Re: Journey to being diagnosed, treated, and already first flare up

    You will be in good hands at Duke.




    Sent from my iPhone using Tapatalk

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