PDA

View Full Version : Wegener's specialist in Florida?



rebekah
03-12-2013, 02:11 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, 01:35 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, 09:14 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, 12:13 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, 03:25 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, 12:00 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:thumbsup:

rebekah
05-25-2013, 10:10 AM
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.

annekat
05-25-2013, 10:21 AM
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.

rebekah
05-25-2013, 01:04 PM
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.

Alysia
05-25-2013, 02:36 PM
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.

rebekah
06-21-2013, 07:28 AM
I saw Dr. Ledford today, and all I have to say is if you’re in the Tampa area let me save you time and money, DO NOT GO SEE HIM. Words can’t even describe my experience. I told him all my symptoms and that my sinuses have been worse the past week or two and my nose hurts just to touch it, I can’t even blow my nose without pain. I thought him specializing in allergy and immunology he might be of some help with my worsening sinus problem. I had an unnecessary test to rule out asthma because me saying “I don’t have asthma” wasn’t enough. He seemed to think I don’t really have, nor are my symptoms related to weg’s, which I’ve been treated for for over a year now. He ordered blood tests with just CBC and sed rate circled on the sheet; no urine test, no xray or ct either. He said my lungs sounded fine, but I know weg’s has affected them. He had me make an appointment for an allergy test, but let’s just say I’m not going to show up for that one. It was a waste of my time, and I spent over $100 which could have been used towards paying off my crazy amount of medical bills. My search continues for an experienced weg’s doctor...

annekat
06-21-2013, 10:17 AM
I'm so sorry to hear that Rebekah! I wonder why so many doctors who know little about Wegs are so reluctant to face the fact that one of their patients has or may have it. Weird psychology! Anyway, I'm glad you got the word out to save someone else from this guy!

Debbie C
06-21-2013, 11:13 AM
Sorry things went badly Rebekah.I just hate it whens that happens, why can't they just come out and say I don't know anything about WG instead of wasting your time and money. On your search make sure that is the first question you ask before making the appointment. Was he a reumy or ent ? Like I mentioned before why don't you try to find a dr you like and trust and maybe they can consult with someone from CC or Mayo. Since you had kidney issues can that dr. recommend someone? Good luck on your search and I hope you feel better soon. I was also gonna say my sister over in Palm Bay is having allergy or sinues issues lately so maybe SOME of your issues are do to that. They did say this was goning to be the worst year for allergy suffers. Take Care

Alysia
06-22-2013, 02:06 AM
Hi Rebekah.
dont give up finding the right doc.
from my experience, I never met ENT or allergy/immunology docs that know about WG. lungs doc were much better. and of course reumatologists.

rebekah
06-22-2013, 03:28 AM
Don't worry, I’m not giving up. :) None of my doctors have experience (it seems impossible to find one in the area), but my nephrologist has been working hard to learn more about weg's since I started seeing him. Even though I don't really like my current doctor she at least consults with someone at Mayo and is better than the guy I just saw. But I'm just not feeling any better lately. I’m thinking about moving to Cleveland to see doctors at CC.

Debbie C
06-22-2013, 10:58 AM
Rebekah, MOVING to Cleveland is a big step. Believe me I live in Ohio and I go to the Clinic. The weather there is horrible and my dr is supposed to be the top reumy there and when I go see him, I see more of his student then him. I am not really impressed with him . I know others see different Drs. there and they may be better.BUT just because it's the "CLEVELAND CLINIC" doesn't mean they are the best. Actually the University Hosp. in Cleveland was voted one of the best in the country. But you have the Mayo clinic so much closer and it's not like you go every month. I was supposed to go up the end of July and they just called me the other day and said he won't be in town so now I am going in Oct. That would make it almost 9 months....so moving there is a BIG step.

rebekah
06-25-2013, 05:00 AM
Thanks. It just gets frustrating at times to have doctors that know so little about WG and not finding a good doctor in Tampa that has other patients with vasculitis. I'm hoping going to the symposium can put me in contact with one. You're probably right about Cleveland it would be a big move, and I should try Jacksonville first since it's closer. And I'd really miss the beaches if I moved... I'm sorry you have to wait so long for your next appointment with the doctor, that stinks.

Debbie C
06-25-2013, 12:31 PM
As long as my blood work keeps coming back good ( knock on wood )and I'm feeling good I don't mind the wait. My kidney dr, here is very experienced withs wgs also so if things got bad I always have him. I can't believe you are having such a problem finding a doc down there. I hope you get one soon.Did you try calling the Vasculitis Foundation to see if they could help ?

rebekah
06-26-2013, 12:14 PM
I've contacted, the VF, CC, and Mayo and no one seems to be able to recommend one in the area. Hmmm... I'm trying to put my time off to good use and am trying to contact all the rheumys (and pulmys, ENTs, and nephrologists too) here to find one with experience. Surely there has to be at least one. I am determined to find one here for me and for other future members to the group from Florida. I'll be sure to share my experiences with other doctors, be it ones to steer clear of, or hopefully good ones to see. It stinks to have negative experiences, but I hope that just means I'm one step closer to finding a great doctor nearby.

Debbie C
06-26-2013, 12:30 PM
When a saw my kidny dr. the other day he said his old roommate dr from back in England (I think) works at the Holms Hosp. in Melbourne. Other side of the state but it's closer than Cleveland !!

rebekah
06-26-2013, 12:41 PM
Thanks for sharing that info, Debra. I'll be sure to check out doctors there for experience. And I agree, better than making the big move to Cleveland.

Pete
06-27-2013, 01:32 AM
Just saw a note on Facebook that Dr Chang Lin, a fellow at Cleveland Clinic, will be setting up shop at University of South Florida in August or September. Hope he's a good one.

rebekah
06-27-2013, 01:38 AM
Thanks, Pete! I got that email this morning and posted it there since I've been talking with a few people in that group to try to find someone here... just logged on here to share it with this group - I see you beat me to it. I didn't get any contact info from them, though I did a search and did find he is a rheumatologist. So happy there's finally one coming here. It's great news for all the Floridians. :)

annekat
06-27-2013, 01:39 AM
I hope he turns out to be great! Now if one would just set up shop around here....

rebekah
06-27-2013, 01:57 AM
I'll work my magic and see what I can do, Anne... maybe persuade a doctor at the symposium to move near you.

annekat
06-27-2013, 02:03 AM
Thanks, Rebekah.... it may just be that there isn't enough population concentration here, overall, compared to anywhere on the east coast. But with more and more people being dx'ed, maybe...... not that we want more people dx'ed, but it seems to be happening, and could lead to better and more available treatment in the long run.

maria garcia
06-27-2013, 08:59 AM
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, 09:41 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.

Debbie C
06-27-2013, 11:55 AM
I maybe spending the winter in Fl. so let me know if you do find a good one ! Good Luck
Where is the USF ?

rebekah
06-27-2013, 12:06 PM
USF is in Tampa

Pete
06-28-2013, 11:15 PM
I had my regular checkup with Dr Villa Forte at CC yesterday. I commented to her about Dr Lin's move to Florida. She said that part of the Clinic's plan was to train Vasculitis specialists who would then go to areas where there is need for them. She also said that one of their fellows (didn't get the name) will be going to the Kansas City area.

annekat
06-28-2013, 11:18 PM
That is really great news, Pete! Maybe one of them will make it out here to the Pacific Northwest some day.

Psyborg
07-02-2013, 02:46 AM
Wow Pete...I was there on Friday too. Wish I'd have know we could have chatted :)