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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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At this point, I am discouraged by all the mis(?) information that is hitting me. I have a wonderful NP, thankfully. I am quite prepared to be on my own, once again, taking prednisone forever. I have no faith in white men in lab coats. They do not listen to the patient, just do research on something they are familiar with (does not include CLIPPPERS). I try to find peace, but all this monkey motion has worn me out.
I have made the decision to terminate all contacts with local and Phoenix neuros, as they have not helped and will not help my condition. I am throwing my money away. I have cancelled all doctor appointments for the year. Spent a goodly amount of time trying to clear up ocular cellulitis (fourth round of antibiotics seems to be the charm), and this clippers/MSA-C thing is just getting on my nerves.
SO - have decided to take my health into my own hands. Turmeric, no sugar (real or substitute), other dietary modifications, heavy on the leg yoga, tandem bike, accupuncture. And we shall see what happens. My oppressed mood is already lifting. I found a new, responsive NP. Growing my wildly curly hair out, checking out an African mudcloth dress. Yes, I will remain fluffy, but my CBC shows great numbers with my strict dietary control. So there, crappy family genes!
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1 Reaction@liztbnr I admire you for taking your health into your own hands. It could be a difficult road to walk, but if you work closely with your NP and get help when/if things go wrong, you may be OK. Your spirit does sound lighter! Growing your wildly Curley hair and maybe buying a mud cloth dress!does the NP have a doctor that she reports to?? Maybe you could meet this doctor and make them part of your team. Sound like an idea?
Will you stay in touch with me?
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1 ReactionShe has an affiliation with a doctor, but he just quit! My walk cannot be much more difficult than some white guy in a lab coat saying that I have a deadly disease that will kill me. Yeah, reassuring. I will check into yoga, the place I am interested in has high praise from a neighbor and a 4.7 rating on Yelp! I am offered no meds to aid me in the latest farce of a diagnosis. I am doing better with my leg strength, and a supplement I am taking has helped with my speech. Onward. I will never boogie again, but I am, by Gawd, present.
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1 ReactionHello, I m a 31 years old person who have been struggling for over a year now and diagnosed with a CLIPPERS syndrom arround six month ago after a biopsy. I’m doing my best but it has begun to be quite difficult. I was looking to connect with people who could understand this « new life » when I discovered this wonderful post. Anyone up for a conversation? 🙂
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2 ReactionsHi, this forum was very helpful to me also, as CLIPPERS is so rare and few doctors know about it. I was initially diagnosed with MS, and more that 2 years later correctly diagnosed with CLIPPERS.
If you do not mind, kindly share your symptoms with us, or privately, then we can try to provide support? Symptoms differ much between patients - diplopia is my only symptom.
Sure! I have diplopia, athaxia and disarthry. I have trouble to speak as well and my audition is a bit bad on a side… is your diplopia now « fixed » by the treatment? I just started a new one today!
Thanks for your help 🥰
Hi, is anyone still involved with the CLIPPERS group?
Hi. Ame in San Diego here. I pop in now and then. I really should post more. Happy to report that I’m doing great. Had a 12 mm lesion in my brain in March of 2022 along with the “peppering” of smaller lesions in the brainstem but now my MRIs are clear. Feels like a miracle and I live every day as if it is. Right now I’m trying to regain my fitness after the 8 months on Prednisone. Down to the last 10 lbs! Anyone dealing with CLIPPERS or recovering from Prednisone treatment, feel free to contact me.
Hi. I am! Sorry, I didn’t respond sooner, I just saw this.