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.
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.
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.
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.
Jana
Do not fear anything, just do it afraid!
It does not matter how slowly you go, as long as you do not stop!
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
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