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?

@movingtomadison

Hi Becky – for the last 8 years, it has been a high of 60mg, down to a low of 5 mg prednisone a day and always 12.5 mg of methotrexate per week. For me, I have had 3 flares, due to going lower than 5mg prednisone per day. I'm now on 7.5 mg per day for the last 1.5 yrs and stable, with the methotrexate. You posted in January.. it's November… How did your tapering go?

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@movingtomadison I seem to meet you everywhere! I’ve not been able to taper off the prednisone and, currently, I’m back up to 20 msg. The rituxan quit working and some of the lesions came back. Now we’re trying cytoxan. Luckily, my oncologist is a former coworker, so he takes good care of me. I do have some articles that might interest you and could try sending you the links.
Hit the reply button at the bottom of this message and it will bring you right to this discussion

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Hi! I’m new here. I also have Clippers Disease.

I recently suffered with headaches and seizures and have been put on a new anti-headache medication that I think made my Clippers worse. I’m getting an MRI tomorrow morning to see what has changed.

When people talk about “balance” issues, what are you experiencing? Do you feel something in your head, or is it just your muscles not cooperating?

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@ninamichelle

Hi! I’m new here. I also have Clippers Disease.

I recently suffered with headaches and seizures and have been put on a new anti-headache medication that I think made my Clippers worse. I’m getting an MRI tomorrow morning to see what has changed.

When people talk about “balance” issues, what are you experiencing? Do you feel something in your head, or is it just your muscles not cooperating?

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@ninamichelle
Welcome! Connect is a forum where we all share information on what works and what doesn’t about our health. No professional here, but we do try to help you advocate for yourself.
You asked about balance issues. Well, the answer is both. At least I do. None are terribly serious or really noticeable to others, but I sure can tell. Winter and ice only make it worse. When you have your MRI, make sure it is done with/without contrast—-they get a better reading.
Are you having balance issues? What makes you or your doctors think it’s Clippers? Becky

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I was diagnosed a few years ago. I was doing so well on prednisone, but recently I think I took an additional medication that either caused a flare-up or there could be fluid in my brain. I have never felt so uncomfortable and unsteady in my life!

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@ninamichelle

I was diagnosed a few years ago. I was doing so well on prednisone, but recently I think I took an additional medication that either caused a flare-up or there could be fluid in my brain. I have never felt so uncomfortable and unsteady in my life!

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@ninamichelle How are you doing now after your flare up? Are you just taking prednisone?
And you recently had an MRI—how did that go?

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@movingtomadison

Hi Becky – for the last 8 years, it has been a high of 60mg, down to a low of 5 mg prednisone a day and always 12.5 mg of methotrexate per week. For me, I have had 3 flares, due to going lower than 5mg prednisone per day. I'm now on 7.5 mg per day for the last 1.5 yrs and stable, with the methotrexate. You posted in January.. it's November… How did your tapering go?

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@movingtomadison How have you been doing? I last heard from you a week ago and would love to touch base. Becky

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@becsbuddy

@movingtomadison How have you been doing? I last heard from you a week ago and would love to touch base. Becky

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thanks – after being brave and honest about having clippers and getting here to meet you all, I retreated… too much painful honestly. So – I threw myself into a fundraiser for daughter's school to avoid thinking about Clippers for a few weeks. now I'm getting prepared to come back in…. I find this part of my identity very difficult to integrate – and so – this is a long journey of leaning in.. and leaning out/denial… thanks for being patient with me…

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@movingtomadison

thanks – after being brave and honest about having clippers and getting here to meet you all, I retreated… too much painful honestly. So – I threw myself into a fundraiser for daughter's school to avoid thinking about Clippers for a few weeks. now I'm getting prepared to come back in…. I find this part of my identity very difficult to integrate – and so – this is a long journey of leaning in.. and leaning out/denial… thanks for being patient with me…

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@movingtomadison integrating is so difficult! I wanted people to see me as I was, not as someone with a chronic illness that affected everything. But, now, I realize that these are my friends and they help me when needed.
I’ve also stopped calling the illness, Clippers. To me, it sounds dumb. My neurologist calls it lymphoproliferative disorder but I say I have some lesions on my brain. Then I don’t need to explain.
I work with a therapist, too. She’s been very good in helping me deal with everything. Guess we need to keep on keeping on!

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