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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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Well both I have Clippers and I read something about White Matter disease.
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1 ReactionNo sé mucho sobre el tema. Tengo Clippers y en mi última resonancia magnética apareció una enfermedad de la sustancia blanca. Es leve. Me pregunto si esto me está causando problemas de equilibrio.
I don't know much about it. I have Clippers and white matter disease appeared on my last MRI. its mild. I wonder if this is causing me problems with balance.
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1 Reaction@luma22 I also have Clippers disease that impacted my voice, my balance, and my ability to walk. It seems depend on where the lesions grow on the brain.people have all different symptoms. Some are even diagnosed with something other than clippers. It is such an unusual autoimmune disease that most doctors have never heard of it.
I may have an article on Clippers that I can post here.
What symptoms did you have that led you to see see doctors. And what treatment are you on?
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1 Reaction@luma22
https://pmc.ncbi.nlm.nih.gov/articles/PMC6472233/. I found this article on Clippers but, unfortunately, it’s in English. I don’t know how to translate on the computer. I hope this article helps
Síntomas iniciales: mucho cansancio, temblor de manos.
Posteriormente, mareos, vómitos, taquicardias, dolor de cabeza, desequilibrio, temblores piernas, tronco y cabeza.
Tratamientos varios.
Actualmente, prednisona e inmunoglobulinas. Posiblemente, volveré a MabThera.
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1 Reactionmight be your meds making you dizzy
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1 ReactionI had the same symptoms as you and almost died in the hospital two years ago. The MRI lead the doctors to believe I had 6 stocks. A second neurologist confirmed I had CLIPPERS. The high dosage of steroids and the low prednisone (25mg) saved my life. I have been off of prednisone for 4 months. Yes, it causes health issues but it did save my life. I am now functional but do have some balance issues.
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4 ReactionsSin esteroides hace 4 meses.
¿Estás sin ningún tratamiento?¿O cuál tomas?
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