I feel like im getting no where!

[maria garcia]

Today I took my daughter to the ENT. her Sinuses are moderately inflammed. The doctor wants to put her one Nasonex(steroid drops for a month and allergy pills for a month and then if needed
do the biopsy. I am so dissapointed. I asked him if the drops ( steroid) will mask and make her feel better. He said with Wegeners she wont feel better. And it won't mask. I personally don't believe it and I feel like this waiting game is driving me crazy. There also going to do a hearing test bcse her pedetrician feels she has some hearing lost( she used some devise on her ear and came to that conclusion. It wasn't a real hearing test.(something else to worry about) I need to find out now!!! Im having problems finding the doctors that take my insurance. Im so upset today. I want to ask you if you use nose drops.? Or do they not prescribe them for Wegeners. Her Rhemy doesn't even know im doing this . But I cant wait three months to the appoint. Her eyes are still red she has been to four doctors and vasculites has been ruled out but still red eyes. She seems doing well. Im afraind that if she ends up taking the heavy meds will make her more sick. But now I just need a diagnosis!!!

[vdub]

I'm sure I saw it somewhere, but where are you located?

[maria garcia]

I live in Miami FL.

[vdub]

So Cleveland probably is your best bet for a specialist. Have you contacted them?

[Rini]

Today I took my daughter to the ENT. her Sinuses are moderately inflammed. The doctor wants to put her one Nasonex(steroid drops for a month and allergy pills for a month and then if needed
do the biopsy. I am so dissapointed. I asked him if the drops ( steroid) will mask and make her feel better. He said with Wegeners she wont feel better. And it won't mask. I personally don't believe it and I feel like this waiting game is driving me crazy. There also going to do a hearing test bcse her pedetrician feels she has some hearing lost( she used some devise on her ear and came to that conclusion. It wasn't a real hearing test.(something else to worry about) I need to find out now!!! Im having problems finding the doctors that take my insurance. Im so upset today. I want to ask you if you use nose drops.? Or do they not prescribe them for Wegeners. Her Rhemy doesn't even know im doing this . But I cant wait three months to the appoint. Her eyes are still red she has been to four doctors and vasculites has been ruled out but still red eyes. She seems doing well. Im afraind that if she ends up taking the heavy meds will make her more sick. But now I just need a diagnosis!!!

I know the waiting is bad. I was given a spray for nosebleeds that helped stop the chunky red bleeding while I was not diagnosed. I do not have as much nose problems so it helped but they did the biopsy for my nose before.

[pberggren1]

Maria, you have to get a Wegs Specialist involved. I suggest Dr. Phil Seo at JHU in Baltimore. He is very good, compassionate, and a good sense of humor. Please have your local doc contact him to consult on your daughters case before it is too late. The ENT should have done the nose biopsy. You have to be more persitent and ask more questions with these docs.

[beeinformed]

Hi Maria!

There are two excellent opthamalogists located in Miami, Florida, whom you might wish to consult with about your daughter's eyes. They specialize and treat patients who have inflammatory symptoms of the eyes and one of the two eye doctors , Dr. Victor Perez, did a fellowship with Dr. Stephen Foster, who is considered one of the best ocular immunologists in his field.

Victor L. Perez, MD
Professor of Ophthalmology
University of Miami School of Medicine
Bascom Palmer Eye Institute
900 NW 17th St.
Miami, FL 33136
Appointments: (305) 243-2020


Janet Davis, MD
Professor of Ophthalmology
University of Miami School of Medicine
Bascom Palmer Eye Institute
900 NW 17th St.
Miami, FL 33136
Appointments: (305) 243-2020 | Office: (305) 326-6377


I hope one of these doctors are listed in your insurance plan as a participating provider as they are two excellent choices.


I hope this info is helpful.

[Jack]

Red eyes and nose problems is just screaming out Wegener's Activity to me.

Steroid nasal spray should not be required if the oral steroid dose is correct and my only experience of using sprays was a disaster although I must add that the ones I tried were not steroid type.

[renidrag]

Maria: There is a Vasculitis Doctor in Jacksonville, Dr. Augustine Lee. Go to www.vasculitisfoundation.org (http://www.vasculitisfoundation.org) and the address and phone number is there. It is a bit of a drive, but the closest to Miami.
Dale

[NicShaf]

Maria,
I was given a steroid nasal spray about an month before being diagnosed with Wegs, and it didn't do anything for me at all.

Are you doctors saying that Vasculitis is ruled out, but they are still looking at Wegener's? They are one in the same, if your doctors are sending mixed messages like that, I agree with everyone else, you need to get to a specialist.

[Sangye]

I asked him if the drops ( steroid) will mask and make her feel better. He said with Wegeners she wont feel better.
That's ridiculous. The doctor has no idea what he's doing. I hope you'll check into the docs recommended by others in this thread.

[Chris G]

Maria - I agree with all posts here! You need to get her to a vasculitis specialist. The doctors you're dealing with are likely what I call garden-variety specialists. The rheumatologist likely deals with arthritic old ladies all day, and perhaps has one or 2 lupus patients, the opthalmologist likely sees glaucoma patients and eye infections all day, and the ENT is probably well versed in deviated septums and ear infections. They're good if you have a basic need wtihin their field of speciality, but they are not qualified to diagnose or treat wg. Some of these guys aren't even wise enough (or humble enough) to tell you that you should see a specialist! I ran up against this with the 2 rheumatologists I saw, who failed to diagnose me, or even consider that I needed to see someone who was more qualified than they were. Unfortunately, this is the same story many people on this board will tell you.

Your daughter's eye symptoms are so very similar to what I had in 2007/2008. After seeing 2 optometrists and 2 garden-variety opthalmologists, it was a 3rd very skilled, and highly regarded opthalmologist, who first suggested wg, and ordered ANCA testing for me. The opthalmologists who were recommended by beinformed, sound like they may be well qualified. And the vasculitis doc in Jacksonville may be your best bet.

I understand that it's sometimes a struggle with insurance companies, but somehow there IS a way to get her to these specialists. You will continue to spin your wheels and worry yourself sick, if you do not.

[maria garcia]

I know the waiting is bad. I was given a spray for nosebleeds that helped stop the chunky red bleeding while I was not diagnosed. I do not have as much nose problems so it helped but they did the biopsy for my nose before.
Rini was the sinus biopsy what diagnosed you with Wegeners?

[Rini]

Rini was the sinus biopsy what diagnosed you with Wegeners?

Partly, but in the end it just help put the doctors in the right direction. They tested my blood and lung biopsy for the final verdict.