Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

January 3, 2017

Diagnosis and Treatment for a Rare Disease Brings Back Trish Byrd’s Hearing and Optimism

By SharingMayoClinic

Careful evaluation at Mayo Clinic reveals that the source of Trish Byrd’s debilitating ear problems was actually a serious and possibly life-threatening disease.

In spring 2016, Trish Byrd went deaf. And no one knew why. With constant ear pain and unable to hear, Trish saw seven different doctors in her home state of New Mexico. After months of treatment, there was no improvement in her symptoms.

“I kept asking, ‘What’s wrong with me?’” Trish says. “None of my doctors could give me an answer. That’s when my husband and I decided it was time to go to Mayo Clinic.”

At Mayo Clinic’s Arizona campus, Trish met ear, nose and throat specialist Peter Weisskopf, M.D. He carefully reviewed her records, talked with her about her health history, and did a physical exam. By the end of their first meeting, Dr. Weisskopf believed he knew what was causing Trish’s symptoms.

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I too have GPA started last Agust 2016, the systems are right on point. The GPA attacked my sinus, lungs and kidneys and I ended up in the hospital for over seven weeks. My kidneys were in complete shutdown and I was on Daylisis and Plasma exchanges for several weeks. Luckily my kidneys do start to work again after the treatments along with the normal treatments for GPA.

I’m currently seeing my Nephrologist that is leading my treatments for recovery and hopefully remission.

My Question is shoukd I also be seeing at Rheumatologist for the disease?

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Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this website. If you would like to seek help from Mayo Clinic, please call one of our appointment offices (Arizona: 480-301-1735 Florida: 904-953-0853 Minnesota: 507-284-2511).

Or you might consider looking into our Mayo Clinic Connect website (http://connect.mayoclinic.org), where you can communicate with other patients who may have had similar experiences.

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Yes I have wegners and I have an amazing rumatoligest, I was only two months away from dying, my systems shut down was sick for over a year, it also brought on fibermyalgia.

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Yes u should i didnt know this til i went to primary dr. Rheumy dr treats wegeners

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Yes, you should see a rheumatologist, I have been in and out of revision. Memory loss and lungs always hurting. Treatment is the only way. I got wegners 4 years ago. Chemo and retain. It works most of the time.

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I wish they could have figured out what is wrong with my Sister. Was told her condition is real, but they don’t have the testing to find out what it is. So she is suffering and at a loss of what to do next.

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Depression is the biggest thing I deal with, I am in pain every day. Wegners brought on fybermyalgia and with depression. If any one has suggestions about diet please message me or leave a comment, thanks. This last four years have been a long road, I find I don't eat very much any more and keep dropping weight everything tastes metallic so any help would be so appreciated.

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