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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.
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1 ReactionHola @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?
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1 Reaction@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?
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1 ReactionI 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.
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.
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3 ReactionsWelcome @gep ! We’ve got some very nice members in this group, and it seems as if everyone presented with different symptoms and is being treated differently! It’s great that your doctors recognized clippers! You will have to learn to pace yourself and all that you like to do. There is a good article somewhere in here—I’ll give you the link:
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/.
It’s a great article and will help you plan your days. Take care and stay with the group!
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2 ReactionsThank you Becky!
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1 ReactionSteroids 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
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3 ReactionsHello 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.
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