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Mentor

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.

mikedmc27 | @mikedmc27 | May 6 6:04pm
In reply to @dancing1 "I love Dr Rabin. Best to you!" + (show)
@dancing1

I love Dr Rabin. Best to you!

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He is amazing! He got me an MRI the next day. then sent me to the ER. AWESOME DOC! Thank you for the positive thoughts for me and my Family ma'am.

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mikedmc27 | @mikedmc27 | May 6 10:30pm
In reply to @liztbnr "I was diagnosed with CLIPPERS twelve years ago by Dr. Elizabeth Schubert at Mayo Scottsdale, who..." + (show)
@liztbnr

I was diagnosed with CLIPPERS twelve years ago by Dr. Elizabeth Schubert at Mayo Scottsdale, who had several CLIPPERheads under her wing. Moved to Florida a few years later, and there was zero knowledge of my disease there. I ended up under care by a gp, since there was apparently nobody in Tucson who treated this. I have ataxia, diplopia, double-vision, laughable balance, periods of whispery voice and cramped handwriting. My condition was not treated for what it was diagnosed originally. One neuro said I would get better or worse.
Been on pred for twelve years, what a joy. Trying to diminish dosage from 10 mg. We shall see. My present doctor is scrambling to find someone with knowledge and experience, but, quite frankly, as rare is this disease is, it will be like looking for a needle in a haystack.

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Dr. Brain Rabin in chandler AZ. Neuro associates. Did a fellowship at Mayo. Knows Clippers.

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mikedmc27 | @mikedmc27 | May 6 10:39pm
In reply to @dustymi11er "Hi all Hope everyone is as well as can be. Well, I’m now wheening of the..." + (show)
@dustymi11er

Hi all

Hope everyone is as well as can be. Well, I’m now wheening of the 60mg steroids 20mg at a time and onto the immune suppressant mycophenolate. So far so good symptoms wise feeling a little more dizzy but getting around the house without my stick. Still getting physio which can tire me quite quickly and struggling with the 1 let stand and heal to toe walk but vast improvement since coming out of hospital. I had a throat X-ray today as still struggling to eat solids but slow and steady progress in all respects. My hiccups are less frequent and more controlled. What is driving me crazy is the constant wet feeling on the left of my face which feels like blood dripping from my head constantly. I’ve been given pills for this so see how it goes. Has anyone else experienced that kind of thing? Other than that I’m plodding on and hoping to be back to some sort of normality for Xmas. Again thanks for the support on here I’d be lost looking for info without the help I’ve received here. Keep ahold everyone and hopefully here from you soon
Dusty

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Hello!! I have the same feeling on my face. It has been getting better on the 50mg steroid daily. I’m about 2 weeks out of the hospital. It’s the craziest feeling ever. I also have a numb lower lips that comes and goes. Hope you are doing well!!

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donnyboy | @donnyboy | May 7 9:59am
In reply to @dancing1 "You’re very welcome." + (show)
@dancing1

You’re very welcome.

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I am a new member who received a CLIPPERS diagnosis from my neurologist 4 days ago. I would like to post a description of my condition, but don't know how to, since there is no CLIPPERS support group. Is posting here the way to go? Thanks for getting me the name of the doctor in Arizona.

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1 reply
donnyboy | @donnyboy | May 7 10:28am
In reply to @donnyboy "I am a new member who received a CLIPPERS diagnosis from my neurologist 4 days ago...." + (show)
@donnyboy

I am a new member who received a CLIPPERS diagnosis from my neurologist 4 days ago. I would like to post a description of my condition, but don't know how to, since there is no CLIPPERS support group. Is posting here the way to go? Thanks for getting me the name of the doctor in Arizona.

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This is my first post. I am donnyboy, 82 years old, healthy all my life and exercise-loving, until having to be hospitalized in October for 15 days, because of vision impairment in my left eye and strange and constant sensations in my left hand, arm and side. Was treated with 5 days of high intensity IV steroids and a blood cleansing procedure called aphoresis. After discharge I was placed on a tapering-down prednisone packet. Did well and thought with OT and PT could be back to cross-country skiing in January. Progressed towards getting back to normal.

My progress slowed however, I was getting tired, and I received a second tapering-down Pred packet. This helped, but a month or so after finishing the packet, tiredness and a lack of stamina grew, along with similar strange sensations on the right side of my body and an expansion of my left side strange feelings. Back to the neurological ward at the hospital April 2-9 for another round of high intensity IV steroids. Doing better now, on my third Pred packet and likely to remain on Pred indefinitely. Look forward to cross-country skiing next winter, and focusing on my OT and PT exercises. Will be seeing a specialist in NYC for a second or supplemental consult on June 12.

Happy to share my story with anyone reading this, to respond as appropriate, and to begin reading more of the posts already posted.

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donnyboy | @donnyboy | May 8 6:05pm

Becky, @becsbuddy

What is the best way to follow postings relating to Clippers? A step-by=step recommendation would be appreciated.

I stumble upon many postings made in 2023, but don't know if a reply a year later is that relevant or helpful.

Thanks,

Don

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | May 8 8:26pm
In reply to @donnyboy "Becky, @becsbuddy What is the best way to follow postings relating to Clippers? A step-by=step recommendation..." + (show)
@donnyboy

Becky, @becsbuddy

What is the best way to follow postings relating to Clippers? A step-by=step recommendation would be appreciated.

I stumble upon many postings made in 2023, but don't know if a reply a year later is that relevant or helpful.

Thanks,

Don

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@donnyboy The best way for you to learn how to get emails is to go to the ‘New to Mayo Clinic Connect’ section on the right-hand side of this page. It should take you through step-by-step.
Like other social media sites like Facebook, Twitter and Instagram, Connect allows you to mention other members so they are alerted to your post.
To mention another Connect member:
Type "@" and member's @username.
Select a name from the list that appears.
When you mention a person, they will get an email notification that you mentioned them in a post. It will also create a link to the member’s profile in the message.

When another member mentions you in a discussion, you will receive an email notification and can reply.
IT IS SO IMPORTANT that everyone use the @ sign before a members name (like I did with your name). This lets the intended recipient know that the response is for them and also the topic of the response.
Try this and see if it works for you. You can always practice by making a response but not hitting the reply button. Or try responding to this message.

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1 reply
donnyboy | @donnyboy | May 9 9:40am
In reply to @becsbuddy "@donnyboy The best way for you to learn how to get emails is to go to..." + (show)
@becsbuddy

@donnyboy The best way for you to learn how to get emails is to go to the ‘New to Mayo Clinic Connect’ section on the right-hand side of this page. It should take you through step-by-step.
Like other social media sites like Facebook, Twitter and Instagram, Connect allows you to mention other members so they are alerted to your post.
To mention another Connect member:
Type "@" and member's @username.
Select a name from the list that appears.
When you mention a person, they will get an email notification that you mentioned them in a post. It will also create a link to the member’s profile in the message.

When another member mentions you in a discussion, you will receive an email notification and can reply.
IT IS SO IMPORTANT that everyone use the @ sign before a members name (like I did with your name). This lets the intended recipient know that the response is for them and also the topic of the response.
Try this and see if it works for you. You can always practice by making a response but not hitting the reply button. Or try responding to this message.

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Becky, @becsbuddy

Thanks for the quick response. The New to Mayo Clinic Connect link, which leads to details about posting and replying, doesn't tell me how to get to postings about diseases like Clippers that don't have their own Section. After I log onto Mayo Clinic Connect, should I type Clippers into the Search function? Is that they best way to get to 2024 and 2023 postings? The only way? After I do such a search I am presented with a dozen or more links with. dates going back to 2016. Do I then select the "Looking to connect with others" link, which seems current? Will I find all the 2024 and 2023 postings there, or do I need to do something else?

Thanks for being a volunteer, Becky!

Don

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suec147 | @suec147 | May 31 8:25am

This has only been around, I think, 7 years. Not very much out there for treatment. MS medication does not work on this. I have been on steroids since March 2017. I have relapses less now than in the first 5 years. I have been doing research to try and help with food, exercise (as I can) and lifestyle. I am looking for someone to connect with to be able to help one another (or definately more than 1 person). Thank you, Sue

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