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Wow… my heart goes out to U!! Mine is a longggg story, and I’m still desperately trying to find help. Was just in the hospital and NOT ONE NURSE OR DR. Knew one thing about it!!!
Before being diagnosed I had 6 years of a myriad of odd infections, severe explosive diarrhea that didn’t respond to any of tge many drugs prescribed ( couldn’t leave the house)., much mucus and constantly blowing my nose. I’m now experiencing issues with pain/numbness of legs… While. I in the hospital I had numerous MRIs… showed inordinate amount of white lesions on my brain… they ruled out MS … many CIRS pts have been erroneously diagnosed with MS. I hope I’ve answered some of ur questions I’d b More than Happy to speak with you anytime if u felt it could be beneficial. I’m Doctored out!!! U REALLY DO ALMOST HAVE TO BE UR OWN DIAGNOSTITION!!!!! Sad

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Replies to "Wow… my heart goes out to U!! Mine is a longggg story, and I’m still desperately..."

@sunnyred2247 You sound like me about 5 yrs ago! I didn’t have diarrhea, but i did have almost explosive vomiting for no reason. The anti-nausea/vomiting meds the gave me didn’t stop anything. I lost 20 pounds. When i was almost non-responsive, i got an MRI which “showed inordinate amount of white lesions on my brain.” Most doctors only thought of MS, but it wasn’t. When i was almost non-responsive, my husband took me to a different neurologist at UCHealth who diagnosed me with ‘chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids.’ It is one of the newer autoimmune diseases. Also called CLIPPERS. Steroids helped me immediately.
See if you can get a copy of your MRI or have it sent to major medical center or teaching hospital near you.

Mayo Clinic has a discussion group on CLIPPERS:
Will you try and look for a neurologist ?

Have they tested for MOGAD? Newer diagnosis, often first thought to be MS or even Non-MS demyelinating auto-immune disorder. It started for me in March '23, and I wasn't officially diagnosed until end of August.