CLIPPERS: Looking to connect with others

Posted by Becky, Volunteer Mentor @becsbuddy, Nov 14, 2019

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?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

gep | @gep | Jun 23 6:58am

In reply to @becsbuddy "Welcome @gep ! We’ve got some very nice members in this group, and it seems as..." + (show)

Thank you Becky!

jimvosacek | @jimvosacek | Jun 23 12:11pm

Steroids do wonders but will do long term harm. Get off of it as soon as you can. You should be functional in time but may not be what you were. At least you are alive. Good luck on your journey. Jim

Ame | @astanko | Jun 24 5:24am

In reply to @gep "Hi All, my name is Gep. I am 60 Yr old male and I live in..." + (show)

@gep

Hi All, my name is Gep. I am 60 Yr old male and I live in Australia. I have just had 3 weeks in hospital with suspected CLIPPERS. Like most of you, I was relieved to find this Forum after a dearth of info online (and from my Drs). My experience shares some similarities to many that have been described here.
I have been dealing with Depression on and off for most of my life, and for the last few years increasing PTSD, Osteoarthrits, Psoriatic arthritis, a cervical fusion and Hiatus Hernia. A few months back my family became concerned that my executive functioning was slowing... so saw a psychiatrist thinking perhaps ADHD may have been in the mix all along. He sent me for a full brain MRI and there was the Pons lesion. Over a couple of weeks I began to experience the "drunk walk" Ataxia; Nystagmus; Dysarthria; Cognitive Impairment and disabling fatigue. Basicly I felt like my mind and body slowed to a crawl and there was an almost complete disconnect between my conciousness and my body.
When I finaly couldn't get out of bed my wife took me to hospital. After 2 weeks of every scan, puncture and blood test possible, without any obvious issues other than the symptomology and brain lesions my Neuro decided to try Hi dose IV Prednisolone - 1000mgs daily for 5 days. Miracle cure. Sort of... A week later I was home, and now a week after that I am tapering with oral Pred and I geuss I'm running at about 70%. Much better than the acute period, but still need a walking stick, napping every day and mentally fatigue easily.
Thank you Everyone for your generosity and openess sharing your stories here... it certainly helps to know I'm not the only medical "Unicorn"
Phew! Sorry about the novel!
Oh, I just remembered some strange things that happened in the weeks leading up to the hospitalisations - I had several episodes lasting from a few seconds to minutes where 1) my perception of the world went into slow motion - literaly felt like I was watching and listening to a slow motion replay of my surroundings and 2) at other times I also experienced my surroundings like a stop motion movie, where everything seemed to take place in a series of stuttering freeze frames.

Jump to this post

Hello Gep. I have much to say but my wife and I are currently traveling so I must keep it brief. I also had the sensation of experiencing the world in slow motion and in freeze frames. Computers have a metric called a refresh rate - the number of times per second that data is refreshed on a monitor. I believe that CLIPPERS interferes with our brain's "refresh rate" so that we experience a lag between what is going on around us and the messages hitting our consciousness. I had a terrible time crossing a street...I couldn't properly see due to the juttery double vision AND I would look both ways but remain unsure if a car was coming. It was impossible to explain at the time, and very dangerous. I did a months-long taper off Prednizone and now get a shot of Rituxan by IV once every six months. It has truly been a miracle cure for me, this afternoon I will be exploring Málaga, Spain - a dream come true considering I could barely walk due to CLIPPERS 3 years ago. If you have this scary disease, know that there is a good chance you'll fully recover. It just takes time. Good luck Gep, I will write more when I'm home again.

gep | @gep | Jun 24 8:47pm

In reply to @astanko "Hello Gep. I have much to say but my wife and I are currently traveling so..." + (show)

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!

luma22 | @luma22 | Jun 25 9:34am

In reply to @astanko "Hola @Luma22. Yo hablo un poco de Espanol. Me llamo Amelia y he tenido CLIPPERS desde..." + (show)

Actualmente 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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Ame | @astanko | Jun 26 11:34am

In reply to @luma22 "Actualmente 15mg/48 horas de prednisona. Estuve con Mab Thera, entre otros tratamientos. Creo que, actualmente, están..." + (show)

¿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.

Becky, Volunteer Mentor | @becsbuddy | Jun 26 1:02pm

In reply to @astanko "¿Alguna vez recibiste un tratamiento con dosis altas de prednisona? Cuando me diagnosticaron, tomé 1000 mg..." + (show)

@astanko Ame, thank you for helping with this new member.

Becky, Volunteer Mentor | @becsbuddy | Jun 26 1:17pm

In reply to @luma22 "Actualmente 15mg/48 horas de prednisona. Estuve con Mab Thera, entre otros tratamientos. Creo que, actualmente, están..." + (show)

@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.

luma22 | @luma22 | Jun 26 2:40pm

In reply to @becsbuddy "@astanko Ame, thank you for helping with this new member." + (show)

Sí, actualmente estoy 5 días 1g diario IV (hoy 2⁰).
Me viene bien, pero sigo con síntomas.

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gep | @gep | Jun 27 10:26pm

In reply to @luma22 "Actualmente 15mg/48 horas de prednisona. Estuve con Mab Thera, entre otros tratamientos. Creo que, actualmente, están..." + (show)

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?

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