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Hi, I’m recently diagnosed with CIDP. Anyone living in Santa Cruz or Bay area California been down this road and willing to answer questions? Seeking experienced neurologist, working on getting up to Stanford (center of excellence).
I already responded to your other question about IVIG, but now I noticed this one. I live in Sunnyvale, and I’m more than willing to answer your questions, either by phone or through a forum like this.
First off, my first neurologist was at PAMF (in Mountain View), and I wasn’t happy with their style or treatment suggestions. So then I switched to Stanford Hospital, which I expected to be a positive change. Once again, I didn’t care for the doctor or what they suggested. Then I researched Centers of Excellence on the GBS/CIDP forum, and I found the Forbes Norris center in San Francisco. My doctor is absolutely terrific! His style, his techniques, his bedside manner and his treatment suggestions are just perfect for me, and now my CIDP fully in remission.
Let me know how I can help you!
Sorry for the late response, thought I had responded via email, doesn’t seem to work that way.
Saw your previous response, great to hear a success story.
I’m in the trenches now, losing strength in my legs for the last four months, started prednisone 3.5 weeks ago, was scheduled for IVIG last week, but it got postponed due to the shortage.
Where were you able to get IVIG through the guys up in SF? My current Neuro is in Mt. View and I live in Santa Cruz, which makes things a bit complicated. Debating switching to local SC neuro, as seems necessary to get IVIG here locally, vs going to Stanford(Which is on the center of excellence list) or Forbes Norris.
Thanks again, my email address is firstname.lastname@example.org if you don’t mind to send your email address there, Ill reach out with more questions, if you don’t mind. Micah
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