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jl1 (@jl1)

Waiting on diagnosis

Brain & Nervous System | Last Active: Nov 3, 2020 | Replies (30)

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Ugh! Ok. Now I have ANOTHER possible for diagnosis. I saw a neuroimmunologist at Duke Medical on 8/26. He mentioned Behcet's and Sjogren's but said before he can start treatment of rituximab infusion, he wanted to do some lab work and wait on my pathology report. It came back showing benign hemangiomas in my t10 vertebrae, so no cancer. He said the notes that he got from Duke mentioned CLIPPERS. Has anyone heard of this. The oncologist said it is a fairly new disease and is super rare.

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Replies to "Ugh! Ok. Now I have ANOTHER possible for diagnosis. I saw a neuroimmunologist at Duke Medical..."

Hi, @jl1 – sounds like a bit of a long and winding road toward getting a diagnosis. A Connect member who is familiar with CLIPPERS is @becsbuddy, so I'm tagging her so she can interact with you about it.

Hi @jl1, @lisalucier said I should get in touch with you. I was diagnosed with CLIPPERS about 18 months ago. None of the radiologists recognized the abnormal MRI but the neurologist thought he knew what it was. I had a brain biopsy that confirmed the diagnosis. CLIPPERS refers to an inflammation on the brain that can look like MS or Parkinson’s disease. My husband decided that he would take me toDenver to the university medical center because no one in our town knew what it was. Intravenous steroids changed everything for the better. I’ve been on prednisone ever since and got my first rituxan dose in Dec. ‘18. Now I get it twice a year. Things have gotten better.
What were your symptoms that led you to the doctor?
I hope they find out what’s going on with you soon! Stay in touch and let us know how you’re doing

Thanks for your repely , I'm still looking for more answers before I do head surgery for Chiari! I'll pray for you

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