Lesions on the brain and autoimmune disease

@momma1960

I have autoimmune problems as well and have small lesions appearing in my brain and moving in very unusual directions, making for MRIs that even neurologists say they have never seen. My diagnosis, only a week or so ago, is Clippers, a rare demyelinating disease with only 50-60 cases identified across the country. You might mention Clippers to your neurologist.

Thank you for this information, I see my neurologist in August as I also have Familial Essential Tremor. And I am having so many other symptoms that I’m hoping she will actually check me out instead of just saying that it’s the tremor that is causing my other symptoms, which I don’t agree with. I have been researching my symptoms and they are symptoms of MS but she tells me that I don’t have that or Parkinson’s or MS. We all know our bodies and what is happening and they just don’t listen.

I am suffering from Krohne's disease. need help to decide on surgery (last resort, every treatment has failed including Stelara infusion that helped somehow, but still suffering). Need to second opinion from Mayo Clinic.

@momma1960

Neurologists have to rule out potential causes. Mine did with MS, NMO, etc., but what led to my new diagnosis, which she had not been familiar with, was how well it fit the interrelationship of my various symptoms and my taking of steroids, plus how that interrelationship fit with my MRIs and other test results. My first symptoms emerged in 9/23, so with a diagnosis of clippers in 5/24 one can see how long it can take to come up with a diagnosis like this. I am going to find out more about clippers when I see a NYU Langone specialist on 6/12.

Could you please tell me what Clippers and NMO is?

@momma1960. Here is the link to a discussion group about Clippers. I’ve had it for about 6 years now and it’s pretty well controlled. Clippers stands for chronic lymphocytic inflammation with pontine perivascular involvement responsive to steroids.
https://connect.mayoclinic.org/discussion/clipperslooking-to-connect-with-others/
It’s not a very active discussion but, if you post, the members will jump in! Becky

I'm not a medical professional, so this will be a layman's reply. The initial diagnosis I received was that I had a demyelinating disease caused by an unknown virus. Various possibilities, like MS and NMO, were tested for and ruled out. After I experienced a setback in my gradual improvement in symptoms, which led to a another hospitalization and effective treatment with steroids, my neurologist and her team recognized that my case fit very well into the rare category of diseases known as clippers. Clippers is an acronym for Chronic Lymphocytic Inflammation with Pontine Perivascular Enhancement Responsive to Steroids. I believe it is a small niche within the broader category of demyelinating diseases, but still something caused by an unknown virus, with 50-60 cases Id'ed in the U.S. I don't know what NMO is, but I need to be re-tested for it every six months or so. You or your neurologist can find out more about Clippers by searching online,

Welcome toMayo Clinic Connect. You will find a community of folks sharing their experiences in hopes of helping someone else. Wishing you the best.

If you can get a diagnosis for MS, there's more medication approved, and a bigger support network.... more research, it's essentially a demilenating autoimmune disease that can present differently in different people. Please consider getting a second opinion? Ms has good treatment options, and these other autoimmune diseases have similar issues, but different or fewer treatments.

Autoimmune sucks, sorry that you are going through this....

i believe it’s important to get an accurate diagnosis. a diagnosis that’s inaccurate albeit lots of treatments available…..is unlikely to be an optimal solution.

I have an atypical meningoma and will be seeing an oncology neuro-surgeon next week (per referral of my neuropthamologist.

Today i saw a university ENT to rule out potential of “septic arthritis”. There are lots of strong antibiotics available to treat sepsis—grateful i wasn’t prescribed one—in my case i would have been likely to have had an adverse reaction. Just my opinion, but it is my belief that if a patient doesn’t trust a physician, it’s best to find a physician you trust.