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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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@liztbnr Here is another article you can share with your doctors. Much of it is over my head, but much is understandable.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3927899/
Any neurologist would be interested in reading the article
It’s a tough road, but I know you can do it!
Becky
Thank you so much. This is such a mysterious disease. My former boss teased me about how I was always so different!
Will find out when I call a rare disease center in MD. Going to arm myself with everything I can, since my own doctor is averse to this disease's existence and any alternate drug possibilities. She is fine with normal stuff, but shies away from CLIPPERS. She took over from my recent doctor, and she is underwhelming.
Mayo Clinic turned me out, as I had Medicare supplemental coverage and they only do Medicare patients. Sigh.
No discussion with present medical bobblehead, as she hates this mysterious disease so she is distant. I will most likely have to find another practitioner in resolving this issue. I have a rare disease source that I will call in MD. Someone else with CLIPPERS
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2 Reactionsturned me onto this. So, am gathering up articles, names and phone numbers to find resolution. Many thanks for information and words of encouragement. I used to run, but this race is worse than any course I ran. liz
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3 ReactionsI have never heard of your illness. What a horrible interesting disease. I sincerely hope they have found an answer for you. I was extremely lucky, I just started having horrible pain in my jaw. I thought it must be a tooth, but as soon as I described the pain to my doctor he knew exactly what was wrong. Trigeminal Neuralgia. They
tell me that the Myelin covering of our nerves wears out as we get older and allows the nerve to be exposed. If it is near a blood vessel it rubs against that blood vessel and causes the pain. Thank God again, we have found a medication that gives me relief of the pain, and baby teething medication also does the job. I will keep you in my prayers and ask God to find you a cure.
Gina5009
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1 ReactionI called GARD and they were very kind and helpful. Gave me names of three CLIPPERS specialists for a doctor-to-doctor consult in case my GP agrees to work with them in prescribing a steroid-free alternative for me. June 2 appointment. liz
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1 ReactionI would recommend GARD (Genetic and Rare Disease) organization in Maryland. They were very kind and informative and provided me with a list of three CLIPPERS specialists that will provide a doctor-to-doctor
conversation between one of them and my reluctant GP when I see her on June 2. I am making copies of all things CLIPPERS for her. Here's hoping... lizbnr
@liztbnr Wow!! That’s so great!! The doctor may want to repeat all the blood tests, MRI’s, whatever, so they have a really good picture. They may even want a brain biopsy and spinal tap. I had both and they were no big deal. Took some Valium!
Now, you have to come up with all possible questions that you want answered. Write them in your journal with the answers. If you’re not great at note-taking, use the recording device on your phone (get the doctor’s permission!). You can listen later and take notes again.
I’m so excited for you!! Will someone go with you as your 2nd set of ears?
It's my baby, so I will take notes. At least I have a start. liz
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