Hello from Philadelphia

[XnCelt]

I am 64...I saw you said your Dad is 60...did he experience symptoms for a long time before getting a diagnosis and treatment? My doctors tell me I got my diagnosis and treatment started early. They say my prognosis is good...I hope so.

[Donna-from-Philly]

I live by Valley Forge and have had symptoms of Wegener's since 2011. I personally had a less than positive experience with a University of Penn doctor. I felt like I was a lab rat and even though I wasn't responding to treatments the doctor wasn't making changes because she was using me as a case study. She once told me that she basically had the whole article wrote. They missed a fungal infection in the sinus cavity inside the brain.
Because my optic nerve is involved I went to Wills eye and Jefferson. They have been great and very aggressive in treating the disease. They work closely with a couple of doctors from John Hopkins. An extra bonus is that my Rheumatologist has an office at Bala Cynwd so I'm not driving all of the way into town.
Please let me know if I can be of any assistance. I think U of Penn is a great hospital. You just have to advocate for yourself wherever you go.

[Jaha]

Donna,
I'm sorry for being late in saying hi and welcome to the forum. It sounds like you have been through a lot and have finally found the right treatment. I think it is very important to be your own advocate, especially when being treated at a teaching hospital or facility. All the best to you.

[daystarr8]

Hi Jade. I'm on the west coast but I contacted dr Peter Merkle to help me find a doctor in California. I would try him as well


P.O.W.E.R. Positive ongoing waves encourage remission

[gigi.palumboshatz]

Welcome to the forum. (The Batman avatar is for a forum member who recently passed away.) You have come to the right place to get answers for your dad. I'm on the west coast and not the one to recommend doctors in that area, but there are sure to be some, and it is very important to get someone known as a specialist with the most WG experience possible. You might check this list from the Vasculitis Foundation: VF Medical Consultants .
These docs will consult with other docs for free. But your best bet is to go to one of them or someone equally qualified, and I hope you'll get some names here soon. Best wishes to your dad, and I hope things turn around for him.

You are always so helpful!


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