Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Hi all,
My rheumatologist has raised the possibility of sending me to Cleveland Clinic for further evaluation and confirmation of the current treatment plan (15 mg prednisone, Methotrexate, and RTX every 6 months after my initial 4 doses in December 2013). I was diagnosed with Wegener's in November 2013 and I have a lot of intracranial involvement - severe dural thickening, inflammatory mass extending to skull base and cerebellum, and a couple of blood clots just to make things more exciting. I know a lot of people on the forum recommend Dr. Villa-Forte but I'm curious if anyone is aware of other docs at Cleveland who work more specifically with WG patients with cranial involvement - I still have daily head pain, hearing loss, and balance issues related to the mass effect in my head. Supposedly I'm in medically induced remission but I feel like I'm teetering on the edge of a flare as my CRP has been rising recently as my prednisone dose has been decreasing. Any recommendations would be greatly appreciated!
I am sorry you are going thru such a bad time with this. I go the Clinic and see Dr. Gary Hoffman,he is a rheumy but it sounds to me that you also may need to see a neurologist. Maybe you can make in appt. to see them both the same day. Good luck and keep us updated .
Life isn't about how you survive the storm, but how to dance in the rain !
I agree with Debra about trying to see a rheumatologist and a neurologist on the same visit. I see Dr Villa Forte and am very pleased with her.
You may want to talk to your doc about returning your pred dosage to the last dosage at which you were free of symptoms.
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
Consultation with some experts is always desirable. The clinic can help you determine who is most suited for your needs but also do your own research. One of the Weg experts can advise on who else might be appropriate for you to see at their clinic. Get an appointment with one and then send your case file to them and ask about getting a dual appointment with who ever else they advise.
Knowledge is power! Wisdom is using it to make good decisions!
I have an appt at the Clinic on Sept. 10th. Just wondering if anyone else was going up there then,we could meet up !
Life isn't about how you survive the storm, but how to dance in the rain !
Where is the clinic?
Phil Berggren, dx 2003
I sure wish I lived close by, then I could meet all you nice folk.
Phil Berggren, dx 2003
Wish you did too Phil !!
Life isn't about how you survive the storm, but how to dance in the rain !
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