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Thread: Anyone near Rochester Mn?

  1. #21
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    I like your choice of smileys there, Jolanta. The first is how we'd each feel, the second is how the others would feel about seeing us!

  2. #22
    Doug Guest

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    I look like a top or a turnip upside down, actually, though I'm at least as big as a newborn whale.
    Last edited by Doug; 08-15-2009 at 10:08 AM.

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    I'm the Peanut M&M!!

  4. #24
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    My husband just looked at your reply Sangye and confirmed I look like and M&M peanut too.
    Jolanta

  5. #25
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    Hi mn, so happy that u two will have time to compare things. I guess i should ask if there is anyone around this mickey mouse town with wg, we just moved to st. Cloud from kissimmee and i work at disney. My hubby has had a very bad day, says it is like when he got out of the hospital 3 weeks ago, where he was dx . Short of breath and very tired, slept a lot today. "no fever thank god " i say if he get another fever i'm taking him to mayo in jacksonville, fl er, and hope they will see him. Our family doc is supposed to get us all his test,labs any results from his 2 weeks in the hosp. His bp goes all over the place and we try to adjust his meds to whatever it is in the morn. Has anyone had this prob.? He sees the infectious disease doc(why her i don't know this isn't infect.) dec. 1 but that who is saw him and ordered test in hosp. Who would be the best to see?? Also the nurse practioner of his lung doc next week. Is there any research in wg? I pray that you all have a good week. Disneylady

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    Please don't wait for him to get a fever--get him in to Mayo as soon as possible. Short of breath and very tired are not good signs. Wegs is not an infection, so you can't wait for a fever.

    Neither a family doc, nor an infectious disease specialist (why on earth????), nor a nurse practitioner is in any way qualified to provide the specialized care he needs on an ongoing basis.

    The doctors he should have :
    1) A rheumatologist who specializes in Wegs as his main doctor overseeing his care.
    2) A family doc to put out fires and communicate with the Wegs rheumy as needed.
    3) A lung doc (pulmonologist) if the rheumy thinks he needs one. NOT a nurse practitioner. A doc who knows Wegs well.
    4) If he has kidney involvement, a nephrologist who specializes in Wegs
    5) Any other doctor his rheumy wants him to see.

    The bp problem must be dealt with. It's not okay for it to be jumping around like that. Very hard on the heart, blood vessels and kidneys. His family doc might be the best one to address it quickly.

    If it were me, I'd make 2 calls tomorrow : one to his family doc to be seen tomorrow, and the other to Mayo for the soonest appointment with a Wegs rheumy.

  7. #27
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    Jola, I live in Nanaimo and this summer I went to a WG get together in Vancouver, there were 4 of us there and a couple whose son had it. It was really great. If you would like I can send you the group info, they said they have a number of contacts in the area. You won't be alone for long, unless you choose. For myself I am in the Vasculitis booklet representing Vancouver Island. If you come this way, I would enjoy a visit. I'm hospitable. (That goes for others too who may be visiting in the area)

  8. #28
    Doug Guest

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    FOUR! This is weggie heaven!

  9. #29
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    Cool Anyone in central fl??

    Hi, Anyone around St. Cloud,FL?? I'd like to know who you have for Doctors and are they specialist in WG ? I had a very good rhumy but she don't take our insurance any more. She is Dr. Freeman in Orlando, but I don't know if she is a specialist in WG. Has anyone in FL gone to Mayo? and who do you see there?

  10. #30
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    Disneylady,
    Here's a pulmonologist Wegs specialist at Mayo FL from the Vasculitis Foundation list of docs. You can start with him and ask for a Wegs rheumy at Mayo.

    LEE, AUGUSTINE S., M.D.
    Department of Pulmonary Medicine
    Phone: 904-953-2000


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