Wegener's specialist in Florida?

[rebekah]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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 !!