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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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Wow, thank you for this Ame. Your theory makes a lot of sense and it's reassuring to find out someone else has had a similar experience.
Very grateful for the advice and support!
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1 ReactionActualmente 15mg/48 horas de prednisona.
Estuve con Mab Thera, entre otros tratamientos.
Creo que, actualmente, están perdidos, y no saben que hacer.
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1 Reaction¿Alguna vez recibiste un tratamiento con dosis altas de prednisona? Cuando me diagnosticaron, tomé 1000 mg de prednisona al día durante tres días. Una hora después de la primera dosis, empecé a sentirme mejor.
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1 Reaction@astanko Ame, thank you for helping with this new member.
@luma Welcome to Mayo Clinic Connect! We are going to do our best to assist you. I don’t know if this will help but here are some Mayo Clinic’s and other hospitals that may be able to talk with your doctors:
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members.
When I first got sick, there was only 1 doctor who knew about the disease. I also have several professional articles about Clippers if you would like them.
I almost forgot! I am also on rituxan . I stopped prednisone 3 months ago.
You can ask us any questions and we will try to help.
Sí, actualmente estoy 5 días 1g diario IV (hoy 2⁰).
Me viene bien, pero sigo con síntomas.
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Hi Luma,
sounds like a similar situation to myself (and many others here) good luck, I hope you have family / friends who can help to advocate for you?
Gracias, igualmente.
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