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CLIPPERS: Looking to connect with others
Have you ever been told that you have Clippers disease and you’re thinking: “ what? I’ve never heard of such a thing! What on earth”? Well Clippers is real and is one of the newer Autoimmune Diseases—it was only given a name in 2010. It’s similar to many other AD I’ve read about on Connect: vague, random symptoms that can be debilitating and difficult to diagnose. An MRI and brain biopsy are needed to confirm diagnosis.
My journey with Clippers (Chronic Lymphocytic Inflammation with Pontine Perivascular Enhancement Responsive to Steroids) began with unexplainable vomiting. After many trips to the ER and being shrugged off be doctors, someone decided that it must be a gallbladder problem, so it was taken out, but nothing changed. The vomiting got worse and, eventually, I couldn’t walk without help, I choked on foods and water, my voice changed, and I lost 20 pounds. I was finally taken seriously by doctors when husband again took me to the ER and I was basically unresponsive. I was admitted and given an MRI (which I had repeatedly begged for) and the scan showed a large area of demyelination of my brain. None of the doctors knew what was going on, but the neurologist finally decided on intravenous steroids and a brain biopsy. I have no memory of that hospitalization. When I got to rehab, my husband took me to University of Colorado medical center where I continue to get treatment in their neurology-immunology department.
My message is to encourage anyone, with unexplainable symptoms, to tell the doctors to “think outside the box” and to advocate for themselves. Have someone go with you to appointments and to take notes! Don’t keep information only in your head!
Anyone else out there?
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I ended up in an emergency room two weeks ago with inflammation on my brain. They did an MRi again and they do believe now that I do have Clippers Disease. I may have relapsed over too low of a taper on my steroids. So they did the 500 mg intravenous doses for 3 days and then now 60 mg for 14 days. I feel awful from the symptoms from the steroid fallout. I am lucky that I don't have all they symptoms you guys show here. I have the tingling in the face, tinnitus, and severe headaches. we caught mine early due to a freak trip down the stairs and a concussion that brought light to the spots on that pons during an MRI to find out why my headaches were not going away. The wind down from the steroids are horrible and they are not monitoring the sugar or any other levels that are going off the charts since I left the hospital. I see my regular doctor on Monday so I am going to tell him I need help. I am expected to go back to work as a school teacher and deal with my head feeling as if it is going to explode and being jittery as a cat while going on weeks with no sleep. I have balance issues from time to time but not extreme. I have not had the speech issues yet. I do have serious double vision and dizziness and nausea. Does anyone know how to deal with the issues while tapering down on the steroids?
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1 Reaction@artmom Welcome to Mayo Clinic Connect! You’ve come to the right place! We’ll try to help you but we can’t tell you what to do or pills to take because we’re not doctors. Everyone explains what has helped/not helped with their own experiences. You’ll find that out pretty quickly.
I tapered prednisone (or tried to) 3-4 times before I was successful. I learned that the doctor is there to help ME so I explained the I wanted to taper slowly. When I did it at my speed, it was so much easier! Always just explain what works/doesn’t work and you’d rather do XYZ. Just be careful especially since you’re not a physician.
Learn as much about clippers as you can. You’ll be able to understand the doctors and ask questions. And you cal always ask questions here. We have a group of really good people.
That’s enuf from me, it’s past my bedtime!