Lesions on the brain and autoimmune disease

Could it be C.L.I.P.P.E.R.S.? Chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids (CLIPPERS) is a very rare (< 0 documented cases to date) auto-immune disease that presents with multiple lesions in the brain. I was diagnosed with it at age 54 in spring of 2022 (last year) and after a course of high dose prednisone and follow ups with Rituxan infusions I have completely recovered. I was on pred from March-October but am currently on only Rituxience. My MRIs now show only gliosis (essentially scar tissue) but no more lesions. My symptoms were consistent with cranial nerve damage from the lesions: parathenia (numbness) in parts of my face/hands/leg, binocular diplopia (double vision-scary but kinda entertaining!), oscillopsia (vision jumps around - super unfun), gait imbalance (I still think this was due primarily to the vision issues) and...when things got bad, swallowing problems and a brief bout of rapid eye movement sleep behavior disorder (RBD) (that's a bad one, it indicates that the autonomic nervous system - breathing/heart rate is being impacted). A CLIPPERS diagnosis is one of exclusion, like the other comments note I was initially worked up for a ton of other things (brain tumor, MS, MG, neurosarcoidosis, CIDP, lymphoma and others) but we were able to rule all of those out. Have you been on pred yet? It's a fascinating drug as it does so much in your body (most not good) but it saved my life and I was able to manage the side effects (I now approach my fitness and health as training for a time in the future when I might have to have more treatment). I had hair thinning to, but I chalked that up to the prednisone. I certainly had a lot of fatigue but not your flu symptoms. It could be possible that you have a virus on top of the underlying disorder causing the lesions. Definitely talk to your doctor about CLIPPERS. Also keep in mind that the folks on this forum are often in acute phases or at their wit's end due to problems with treatments and diagnosis. People like me who got better tend to wander back to their daily lives so you don't see a lot of happy endings. But there are! Mine was terrifying but now I'm fine ... things can turn out okay! Here's a pic of me at my most recent Ruxience infusion (I get them every 6 months). My neurologist is planning to keep me on it two years total from when I first got sick...so two more to go.

Hi, just want to let you know that there is a CLIPPERS group on this forum. I have posted my story under @menel. I am in remission after high doses of prednisone worked for me. I am now on Methotrexate (10mg per week) and the neurologist hopes that this will prevent future relapses. He did say that I have a mild form of CLIPPERS, with diplopia being my only symptom. I was diagnosed 2.5 years ago when I was 62.

From what I read there are less than 1000 cases in the US, and my neurologist ( we are in South Africa) have 3 other cases, apart from me. I have read most CLIPPERS articles I could find, so if you want some links, please contact me.

Hi, just want to let you know that there is a CLIPPERS group on this forum. I have posted my story under @menel. I am in remission after high doses of prednisone worked for me. I am now on Methotrexate (10mg per week) and the neurologist hopes that this will prevent future relapses. He did say that I have a mild form of CLIPPERS, with diplopia being my only symptom. I was diagnosed 2.5 years ago when I was 62.

From what I read there are less than 1000 cases in the US, and my neurologist ( we are in South Africa) have 3 other cases, apart from me. I have read most CLIPPERS articles I could find, so if you want some links, please contact me.

My mother has MS and was told she has over a hundred lesions by her neurologist and she's 65. She is still in stage 1 of MS. This doesn't seem right and that is why we are seeing a neurologist at Mayo in August. I have tried to find studies or any information on similar cases and I have found nothing.

No, he never had any flu like symptoms but if you can pull up some info on GFAP I remember reading something about flu symptoms and also infections. He mostly had the gait problem and double vision. They told him MS doesn’t show several lesions that show up the same time, which is what he showed . MS usually shows one lesion at a time at different times which causes what they call a flare up.

@gardrums123 Well, I was just diagnosed with MS and I have multiple lesions on my brain and my spine. Not really sure what you mean by lesions don’t show up at the same time with MS. I think it really just depends on how long you’ve had it before it was found on MRIs.

I’m sorry to hear of your diagnoses, but am glad you will have a treatment that will help. There is no set treatment for what my husband has.
As for his MRI and lesions , they claimed all of his lesions appeared at the same time within a month by the way they “lit up”on the MRI. He had no older lesions Where as in MS lesions appear differently. Some are older and some are newer, but don’t appear all at the same time. I know it’s hard to understand!
It’s been a long and confusing journey for us.

Hi, thank you! I just noticed that my comment says < 0 cases, that should indeed read "< 0" cases. I don't know how I mistyped that but thank you. And I will check out the forum, I didn't realize there was a separate one. Brilliant!