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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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Becky, Please let me know if this went to the whole group, or just to you. I meant it for the whole group, but not sure how it all works yet. Thanks. 🙂
Hello Everyone,
Over the past month or two, I have been reading through all of your posts, starting back with Moderator/Becky’s first post. It has been very helpful to read everyone’s experiences and questions. And, the commonalities, as well as the variation of symptoms that CLIPPERS decides to share with each one of us. I am finally feeling brave enough to share. So, here goes:
I am 58 years old and live in Banks, Oregon (west of Portland). I am thankful to have a loving husband and two adult children. I am a special education teacher. I was diagnosed with CLIPPERS by an OHSU Neurologist on May 2nd, 2024. My Neurologist has had two CLIPPERS patients in a previous practice/another state. I am currently taking Prednisone 50mg (down from 60) and Cell-Cept added 6/10.
Neurologist Visits so to current:
April 16, 2024 - Initial visit
May 2, 2024 - Follow up and Initial diagnosis. Next was scheduled for July 8th.
June 10, 2024 - Was able to get appointment before July due to an increase of symptoms and ER visit on May 28th. Added Cell Cept, advised to see primary physician to get BP meds, and ordered another MRI. Currently waiting for MRI results. Should have in a couple of days.
Next visit will be July 8th.
The lead-time up to my diagnosis took nearly a whole year. It felt very long and so unclear, but we are finally narrowing in. I will provide a separate post to list symptoms and chronicle the one year of appointments, frustration, exhaustion, worry and waiting to get into see the Neurologist, if anyone is interested. Here is what we know and have done from April 16th through current:
Tests Before the First Neurology Appointment:
Vestibular Study/Balance - 2/21/2024 Showed definite problems with brain/eye response to vestibular stimulation that should cause “eye saccades”. My saccade readings were way below normal, from very low to no response at all. The specialist and Dr. B said that either my cochlea was really messed up, or something was happening/not happening between the cochlea and the brain.
MRI - 2/22/2024 and 3/22/2023 - Showed lesions scattered throughout the Central PONS (“salt & pepper” effect visually) and brain inflammation. Cochlea and surrounding areas, both ears, are completely normal/intact, even all of the little “hairs”/nerve receptors. No tumors or masses in the brain.
Tests After the First Neurology Appointment:
Blood work - 4/16/2024 and Lumbar Puncture/Spinal Tap - 4/18/2024
These two tests analyzed together have so far ruled out MS and many other possible culprits.
Second Visit to Neurologist/Initial Diagnosis - 5/2/2024
CLIPPERS (so I guess that makes me a “Clipperhead”)
Prescribed:
60mg prednisone, to reduce by 10mg every 30 days until 20 mgs.
Visit to eye doctor, since I have long-time high eye pressure and take medication for glaucoma. Long term Prednisone can increase blood pressure and eye pressure/Glaucoma.
Take Calcium supplement. Long term prednisone can cause Osteoporosis.
Increase water intake/stay hydrated to help meds work and body heal.
Consider no alcohol, decrease salt, sugar
And, since I had 4 episodes of what I now know to be “Oscilopsia” (temporary loss of visual alignment which cause everything in my vision to slant one direction and look all pixelated for 30 seconds to 1 minute) - NO DRIVING. Wham! Ugh! Oooof !!
She didn’t say I had to take time off work, but my work is not close to my home and I was so worn out, and had no energy/desire to figure out transportation, I took time off work. I ended up being off for a total of 6 weeks. I “returned” (virtually) on May 8th to support the long term substitute with meetings and all the paperwork that happens at the end of the school year for SpEd teachers. I am no on Summer Break. Whew!
I promise my posts will not always be this long. I will now post my Chronical to Diagnosis and my symptoms list. after that, I will put longer stuff in my profile. I haven't set that up yet. Will do. KRISTY 🙂
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2 ReactionsWelcome to Mayo Clinic Connect. @kristyinoregon . We’re glad that you’re here but not glad that it took Clippers to get you here. Your message did go to everyone and it’s posted here in the discussion group. I know that it took a while to get a diagnosis. Almost ALL autoimmune diseases are like that. And I’m glad you’re not driving yet. Until your eyes are totally normal, driving is the last thing you want to do!
I got osteoporosis and cataracts from prednisone. The cataracts are gone now so I just have the osteoporosis to worry about. You might want to ask your PCP for a referral for a DEXA scan which looks at the health of your bones. And coverup when in the sun! Prednisone makes your skin very susceptible to skin cancer.
So, again, Welcome!
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1 Reaction@kristyinoregon
Kristy, thanks for your post, which is the most extensive summary of a Clippershead's medical path I have seen. Since Mayo Clinic Connect is a purely social media-like exchange platform for sufferers of all kinds of conditions, without any moderation or intervention by anyone medically-certified (unless they are also suffering something), your summary may be more than needed. I could be quite mistaken about this. You'll have to judge it yourself.
I was diagnosed as being a Clippers member on May 3, 2024, one day after you! My symptoms began in September 2024 and began with extensive visual impairment of my left eye and parathesis of my left hand before extending to parathesis of the left arm, left chest, left leg and left foot, and the same with my left jaw and the left side of my face. The left side of the body ones have softened a little and vision in my left eye improved greatly. I've gone through two hospitalizations where steroids delivered by IV were the main and successful treatment. I am now on 20 mg prednisone, with my neurologists planning to move me off them in the months ahead.
I had an intensive consultation and evaluation of my complete medical record a few days ago with a second opinion neurologist at the NYU Langone MS Center. This doctor said my condition was complex and puzzling. He thought a diagnosis of Clippers might not be accurate, even given my responsiveness to steroids, because eye impairments are extremely rare amongst those with Clippers. He is proceeding with new blood tests and procedures to help determine if something else is causing some or all of my symptoms. I found his evaluation to be extremely productive and helpful.
Might this apply to you? Who knows. You had or still have visual field infringements too, although perhaps less profound that mine. Or maybe you and I are the "extremely rare cases" where Clippers patients have had eye problems, making Clippers the right diagnosis.
In any event, welcome to the Clippers portion of Mayo Clinic Connect. Like you, I am not sure how aspects of this social platform works, but if it proves of benefit, as it definitely has for me, it is worth the uncertainty. Don
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1 ReactionBecky,
Thanks for the kind welcome. I will look into a referral for a DEXA scan, probably a good idea to get a baseline. I have been staying out of the sun, though sitting in it is one of my favorite things. Now, I just do so with a hat and covered skin, when it is not too hot out.
I am looking forward to being an active member of this forum and learning from others. I have never participated in anything like this, except for university classes, but will do my best to stumble through it. Do you think I should post my symptoms list and the overview of the year it took for me to get to see a Neurologist? I thought I might post it on my profile, but I can see any place that has enough space. I only wonder about this because I would be interested in learning how others got to their diagnosis and what their symptoms are. Thoughts? This question is not just for Becky. I would also enjoy the opinion of others, since I am new at this.
Thanks. KRISTY 🙂
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1 ReactionHello Don,
Interesting that our diagnosis day was just one day different in the same year. Thanks for your advice on the content I posted. I DO need to consider that, for sure, since I have not been a part of social media quite like this before. With regard to my vision, I have a long-term doctor of ophthalmology that I see every 3 months. He knows my eye health well and is working hard to learn what he can about CLIPPERS, while keeping other possibilities in mind. He does regular eye pressure checks and field vision assessments, very thorough. In a January 2024 article in the Journal of Neurology (Li, et al.) indicated that "diplopia" (double-vision) was reported in 51% of patients. My doctor says that "oscillopsia" (which I experience) is very similar to "diplopia", in that they are both two-eye alignment issues. Now that I have said that, I am unsure if I should refer to articles when I am posting to this forum, since I am not a medical professional. However, the article is very good and current, so I lean on it as I am making decisions for my situation.
I am glad to hear you are looking into that second opinion. I think it is completely possible for people to have CLIPPERS, yet have other things going on that are not CLIPPERS. I also consider my diagnosis of CLIPPERS as an "initial" diagnosis, that may not be complete or final. In the article I mentioned above, people seem to be responding positively to Prednisone within several weeks, I have not noticed improvement, but worsening or increase in symptoms. I wonder if symptom sometimes get worse before they gets better, or if I am just slow to respond. I think my Neurologist added Cellcept to increase the efficiency of the Prednisone, so perhaps I just need to be more patient. I guess time will tell.
Thanks for your response to my post. I am looking forward to having access to this platform as I go through this journey, as it seems less lonely and overwhelming when I can hear about others' experiences and interact with them. KRISTY 🙂
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1 Reaction@kristyinoregon You can certainly post a ‘url’ that will take others directly to the article. The only holdback is that you have to wait for a short time. It helps to reduce SPAM!
As for posting symptoms, just list a pertinent few, and I’m sure members will respond!