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CLIPPERS: Looking to connect with others

Autoimmune Diseases | Last Active: 2 days ago | Replies (308)

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@astanko

I didn't have a brain biopsy. My lesions are deep in the pons and both my neurologist and neurosurgeon said that the risk of biopsy ruled it out. They also feel it's not needed to confirm the diagnosis, although we are still working to confirm that it's CLIPPERS and not MS or neurosarcoidosis.
I did get a DEXA scan, it checked just my pelvis and showed osteopenia, which could have predated the brain thing. I'm taking Vit D and Calcium and working more calcium-rich foods into my diet - along with weight training (which I've always done). Thanks for your cautionary words, I am taking them to heart!
Once we get the diagnosis confirmed I'll taper off the Prednisone to something more targeted. If it is indeed CLIPPERS, my neurologist wants to try Rituxan. I've noted your experience with it. I do like my neurologist, Dr. Alexander at Scripps in San Diego. He's fantastic, and the whole team has been great. I'm incredibly lucky to have them working on my behalf. Thanks again for reaching out to me!

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Replies to "I didn't have a brain biopsy. My lesions are deep in the pons and both my..."

@astanko Thank you for bringing us up to date and it’s good to know that you’re doing ok. Be sure to tell us of the final diagnosis.