Wegener's specialist in Florida?

**rebekah** · 03-12-2013, 03:11 PM

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...

**renidrag** · 03-13-2013, 02:35 AM

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

**Sangye** · 03-15-2013, 10:14 AM

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.

**rebekah** · 03-15-2013, 01:13 PM

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.

**Kodiak** · 05-01-2013, 04:25 AM

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??

**Debbie C** · 05-02-2013, 01:00 PM

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

**maria garcia** · 06-27-2013, 09:59 AM

Originally Posted by rebekah

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...

I'm from Miami fl. I heard there is a Cleveland clinic in Weston. My daughter sees Dr. Chacon but I am also one to take her to a vasculities specialist. I

**rebekah** · 06-27-2013, 10:41 AM

I’ve looked into it and there unfortunately isn’t an experienced doctor for WG at the CC in Weston (at least not when I last checked). Dr. Lee is at Mayo in Jacksonville, and I'm sure he’s good since he’s on the VF website. I’m considering going to see him. As soon as I hear something about Dr. Lin and USF (ie, his experience and when he's accepting patients) I’ll be sure to update you.