Multiple Dr's?

[amann8506]

Just curious as to who everyone sees for their Wegener's. I have a Rheumatologist and 3 different Dr's at an Ear Nose and Throat Practice for each of those areas - Ear, Sinus and Throat. Do you all have multiple Dr's, or just see one?

Thanks

[Debbie C]

I have a rheumy, 1 ent ,a kidney dr, a cardiologist, a optomalogist, a dermatalogist, my pcp, a gastrologist (spelling on all these ) I think thats all !!

[windchime]

I have a PCP, pulmonologist, rheumy, neurologist, and ent.

[pberggren1]

My Wegs doc is a Nephrologist. My lung doc is a Pulmonologist. My ENT is an Otorhinolaryngologist. My eye doc is an Ophthalmologist, specializes in retina.

[John]

Phil
In seeing your Ophthalmologist did he have any experience with WG? I am concerned about my eyes being blurred, subject to bright lights, floaters, and streaks of light. I went to an ophthalmologist before I knew that I have WG and he said the floaters were high protein levels. My RM wants me to go to Cincinnati Eye Inst. to have it checked out. Do you think I should ask if any of the dr's know about this disease before I make an apt.? I am sure there is as I don't think my RM doc. would recommend it. Can you give me some feed back on your experience?
Thank you and lets fight WG
John

[pberggren1]

John

A couple Ophthalmologists I have seen have a few other Wegs patients but would not be considered experts because Wegs involvement with the eye is very rare.

I would maybe see if you can get into see one at Cleveland Clinic that could be recommended by someone like Dr. Langford.

The reason I started seeing the one I see now is because my retina was bleeding. He is a retina specialist. So when my gets bad I get injections of a cancer drug called Avastin into it.

They will usually do some scans and pictures of your eye. If he is a retinal specialist then they will have a retinal scanner. But usually there are not many retinal specialists out there.

[Dirty Don]

Rheumy, Pulmy, ENT, and PCP is in on it as well.

[Pete]

My rheumatologist manages the treatment of my wegs. I also have a very good PCP. In addition, I see a pulmonologist and an ENT on a regular basis. I see a nephrologist and a urologist as needed.

[NikkiNicole]

Primary Care, Rheumatologist, ENT, Pulmonologist, Hematologist/Oncologist, Dermatologist, Opthamologist, Endocrinologist and Neurologist ... for now. I'd like to not add anymore of those, thanks.

[Jennie]

My Rheumatologist manages my meds. I also see an Otolaryngologist who updates the Rheumy on my symptoms. Recently as a result of an infection over the holidays, I was also seeing an Infectious Diseases doctor. Besides those, just a family physician. I guess I'm lucky, I only have a few doctors.