User Tag List

Likes Likes:  0
Page 1 of 4 123 ... LastLast
Results 1 to 10 of 33

Thread: Wegener's specialist in Florida?

  1. #1
    Join Date
    Feb 2013
    Location
    Columbus, Ohio
    Posts
    308
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Wegener's specialist in Florida?

    I'm thinking about looking for a new doctor. Don't get me wrong, I like mine, I just feel she's not the best one for me. She isn't a Wegener's/vasculitis specialist, but she does consult with one at the Mayo Clinic. If it weren't for her I probably wouldn't be here today, so I am very thankful. However, I usually feel rushed as she always has a lot of patients and unless I can get an appointment at 8:00am I'm usually waiting a while to see her. I just think that, especially after my recent flare landed me in the hospital, I really need to see a specialist. Does anyone know of any good specialists in Florida? I see that Dr. Lee with the Mayo Clinic in Jacksonville is listed on the VF website... anyone heard good things about him? It's tough to find doctors knowledgeable in vasculitis in Florida, we definitely need more here.
    Hopefully I'll be one soon...
    Last edited by rebekah; 03-12-2013 at 02:13 PM.

  2. #2
    Join Date
    Nov 2009
    Location
    South of Boston
    Posts
    797
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default

    The last I knew Jacksonville was the only one. Not sure of the Doctor's name. Try vasculitis.org and they have a listing of specialists.
    Dale

  3. #3
    Join Date
    Nov 2008
    Location
    Maryland, USA
    Posts
    10,836
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    I think you're smart to seek out a Wegs specialist. It doesn't mean you're ungrateful to your current doc, just that you need someone who is the most qualified in this particular specialty.

  4. #4
    Join Date
    Feb 2013
    Location
    Columbus, Ohio
    Posts
    308
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks, Dale and Sangye. I am between making the trip up to Jacksonville to see Dr. Lee, or possibly flying to Cleveland to see Dr. Villa-Forte since I keep hearing such great things about her on this forum after I graduate. I'd rather see a specialist so I can hopefully avoid another flare for a while.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

  5. #5
    Join Date
    Apr 2013
    Posts
    5
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Rebekah, I understand your frustration with Dr. appointments, the waiting, not being able to make them understand these symptoms that can be so vague. My husband was diagnosed with WG three years ago, his affects his optic nerve, and the visual changes can be subtle. It is difficult to coordinate his Rheumatologist and the neuro-opthamologist, they dont seem to talk to one another! Time is critical with this inflammation stuff as you know. We are located in Fort Myers FL and his neuro-opthamologist (Dr. Auchiche - West Coast Eye Centers) has done some research in this area as well as his Rheumatologist (Dr. Baldinger, IMA). I am interested to know how your visit with Dr. Lee in Jacksonville went. We were also thinking of seeing a specialist at Mayo or Cleveland Clinic??

  6. #6
    Join Date
    Nov 2011
    Location
    Ohio
    Posts
    1,970
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Rebekah...I googled Cleveland Clinic and there are a few of them in Fl., one is located in Naples. I didn't really check out the web-site to much to see what they offer but I am sure if you went there,they would get together with a Dr. up here in Cleveland. I wanted to check into this more also ,I'm going to Fl. on the 15th for a few weeks to visit my sister and she wants me to move down there. But she lives on the east coast by Cocoa Beach.. By the way I haven't talked to you since all that stuff happened which I really don't know the whole story but I am glad you are not in a coma and are doing better
    Life isn't about how you survive the storm, but how to dance in the rain !

  7. #7
    Join Date
    Feb 2013
    Location
    Columbus, Ohio
    Posts
    308
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks for the info. I think I finally found one who has some experience. Dr. Ledford is associated with USF, so I’m hoping he’s good. I have an appointment with him in June. I’ll share my experience with him after the visit in case anyone else from the Tampa area joins the forum and is looking for someone. I turned down my med school acceptance yesterday to get my health back on track, so now that I will have time to spare I may go see a specialist at CC or Mayo... I guess I’ll see how Dr. Ledford is and go from there.

    Debra, I hope you enjoy the visit with your sister and are able to relax on beach.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

  8. #8
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default

    Rebekah, good luck with Dr. Ledford and your recent change in plans. I'm sure you are making the right decisions. I'm glad to hear from you, since I'd just recently been wondering how you are doing.
    Anne, dx'ed April 2011

  9. #9
    Join Date
    Feb 2013
    Location
    Columbus, Ohio
    Posts
    308
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default

    Thanks, Anne. As difficult decision as it was I know I need to start putting my health first. I’m not sure what I am going to do with the time off until I reapply, but I’ll figure it out.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

  10. #10
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi Rebekah,
    nice to hear from you. I missed you.
    I think you made the right decision. first get into remission and then continue with your plans. there is no use to try to learn when your body needs full treatment, needs you to stop the "running", listen to it, carefully take care, relax, rest. this "time out" is very important. I hope you can enjoy it.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

Page 1 of 4 123 ... LastLast

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •