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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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Hi,
Becsbuddy might know more but it usually indicates a lack of new CLIPPERS diagnoses and activity in the forums. Maybe this bizarre disease is decreasing! That would be good news.
Hola @luma22. Yo hablo un poco de Espanol. Me llamo Amelia y he tenido CLIPPERS desde Febrero 2022. Estuve muy enferma, pero mis síntomas eran muy diferentes a los tuyos. Tenía visión doble, entumecimiento en todo el cuerpo y dificultad para caminar.
Me administraron altas dosis de prednisona durante ocho meses y me recuperé por completo. Ahora recibo una infusión de Rituxan cada seis meses y ya no tengo síntomas.
Es complicado porque muchos de los síntomas son los mismos para la enfermedad de la sustancia blanca. Ojalá puedas encontrar un tratamiento que te ayude con ambos. ¿Tomas altas dosis de prednisona? ¿En qué país vives? ¿Tienes un buen neurólogo que te atienda?
@donnyboy, that can happen sometimes that a discussion group goes inactive as people live their lives. Thanks for reigniting the conversation.
How are you doing? What are your current challenges with CLIPPERS? How do you manage the challenges?
@astanko, that would be good news if CLIPPERS were on the decline.
I know @donnyboy wants to connect, so how about giving us an update.
Ame, how are you doing? What does your day-to-day look like today?
I have SLIPPERS, (Supratentorial Lymphocytic Inflammation with Parenchymal Perivascular Enhancement Responsive to Steroids). There are officially 12 of us in the world and I'd love to connect with others with CLIPPERS. I'm told they're similar. My lesions are throughout the left side of my cerebrum. I recently got off the Prednisone and am now on just weekly oral methotrexate. I'm 38 years old.