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← Return to Waiting on diagnosis
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Brain & Nervous System | Last Active: Nov 3, 2020 | Replies (30)
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Well, its been over a year since you posted, but I found you now... How are you? Did you get a confirmed diagnosis of CLIPPERS? if so, I'd like to connect with you and @becsbuddy . Hope you are "well enough".
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Hi, @movingtomadison @jl1. Wow, I’m really glad you found us! Not too many of us exist. I’m doing ok but it sure has been a long road. Just had a virtual appointment with the PA, who works with my neurologist, to set up the plan for the next 3 months. I’m now on cytoxan and prednisone. We’ll see.
So, have you had a long, frustrating journey to diagnosis? Probably took me 8 months til I got an MRI then a brain biopsy. Do you have good doctors? Are you doing OK?
@brayimee I read your posting, also. Have you asked the doctors for a head CT? I kept getting blown off also until a doctor (not mine) agreed to an MRI. And, if you can, contact a university medical center. They are usually interested