Lesions on the brain and autoimmune disease

I had a similar first diagnosis in March plus a "flare-up?" on July 5 and ended up worse. Lots of steroids, finally a diagnosis??? MOG antibody autoimmune disorder. Neuro found it. Had same tests originally as your husband. They ended up figuring out it was MOG? I don't know as just beginning the diagnosis process and learning about it. I do not know what Mayo would do. For reference, I am female and 62.

Do you mind if I ask what it ended up being? Slugging away through the medical system when one knows something is very wrong is maddening. I come on here and feel inspired that I’m not alone, but devastated at how many are facing the same frustrations, seeking a diagnosis. When a doctor says, “oh well, that’s very rare” as a response not to pursue something!!???

I' m sorry, I can't answer that. Sadly, I had lost contact with her when she and her husband moved out of state. We kept it up for awhile, then communication broke down. Long story. I only found out frustrating little about her death when her husband called me after the fact. He was not very "medical" and his explanation left a lot of questions. He is gone now, too in an unrelated accident. So there is no one to ask. I just know that she had lesions in her brain, was eventually in a wheel chair and went to the Mayo Clinis as the last resort I think if specialists nearby are throwing their hands up then go to the experts- and beyond if necessary. Be the squeeky wheel.

My heart goes out to you. We have been dealing with this for a year now. He was also tested for MOG…negative on that. He was 73 when diagnosed.
It’s been a long struggle. He was 204 lbs when he started and now is 157. All muscle is gone. Because they don’t know much about his disease we don’t know if this is normal. They just tell us everyone is different. Our question is always just where are we headed . We are hoping when he is off the steroids he doesn’t have another relapse.

Thank you! I now understand more than I did before. I used to think doctors knew everything and now in just this short time, I have discovered they really don't. If anything, this has made me appreciate the smallest things, and I mean, the smallest things! I pray that you will have some relief soon!

Thank you! I'm sorry about your friend as well.

Hi there,
I read your post & just want to throw this out to you - fungal infestation or some kind of gut bacteria, candida, parasites, etc. A lot of doctors do not check for these & I have been studying this & it is finally coming out at big places like Harvard, etc that this might be the cause of certain autoimmune diseases. I had 3 lessions on my brain when I was 40 (in the year 2000) which the doctor could not figure out. I was misdiagnosed & was told I could only eat certain foods which was almost impossible so I decided to eat very minimal amounts of food & stayed away from sugar & dairy & I got better. I really believe this was due to an infection I had from my c-section that caused the worse infection in my city ever. I had all the above invade my body & I still to this day do not know how I lived through that & the doctors were even more surprised! Anyway, I am 63 years old now with RA & when I do not eat very much I keep my terrible pain down but I also take oil of oregano & it is helping me with the pain also. I am going to see a functional med. dr. in a few weeks to try to get to the bottom of my gut health as my digestive issues caused n=me to loose 5 lbs a week for about 6 months. I have been on low dose steroids (not good) for a year & a half & I am only up to 100 lbs. & holding steady for now but SIBO is what I think I may have & if I can kill off this or whatever it is in my gut I bet I will get a lot of my good health back. I could go on & on but please google bad gut bacteria & autoimmune disease correlations as they are just starting to prove this now. By the way I had am MRI a couple years ago & the lesions were gone. Please research!!

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, 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!