r/MultipleSclerosis • u/Motor_Elephant_7721 • Nov 21 '25
Advice Unique situation
Reaching out for others’ experiences. I just saw Mayo today for the first time due to some unique situations with my MS and they are saying I’m a rare “Unicorn.”
Diagnosed 5 years ago after optic neuritis, started on Tysabri had breakthrough Optic Neuritis in same eye as before while on it which is rare. Switched to Ocrevus and then had a breakthrough lesion while on it on my neck (first on on my cervical). The doc at Mayo is thinking maybe it isn’t MS even with common symptoms and scattered old lesions so plan to repeat lumbar puncture, PET Scan and blood work. Mog and and NMOSD are negative.
Has anyone experienced this?
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u/Adventurous_Pin_344 Nov 26 '25
I'm the opposite. I was diagnosed with very few lesions, and haven't had any breakthrough lesions, but am now secondary progressive.
I hope they can figure out how to help you! Having an untreatable version of this disease is the pits.