1. < Autoimmune Diseases
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.

dablues | @dablues | Jun 22, 2023

Did you know that EBV mimic lots of auto immune diseases. You should do some research on that and find out if you ever had EBV which means Epstein Barr Virus. Can't hurt to do the research and rule things in or out. That is just my opinion. If you had the Virus it stays in your body and lays dormant, from what I have learned so far, and gets awakened by circumstances.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 26, 2023
In reply to @liztbnr "As per expected, my NP wanted no part of handling my CLIPPERS. But I do have..." + (show)
@liztbnr

As per expected, my NP wanted no part of handling my CLIPPERS. But I do have a referral from her to local neuro who I saw in the dim and dark past. He was briefly handling a clipperhead, but with the old tried and true method (pred), so he/she dropped out. Now, I have some serious help for him, and have a late July appointment. A slow slog indeed! Onward and upward (hopefully). liz

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@liztbnr Have you had your appointment yet?? I’m anxious to hear about it! Will you let me know what you learn?

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1 reply
liztbnr | @liztbnr | Jul 29, 2023
In reply to @becsbuddy "@liztbnr Have you had your appointment yet?? I’m anxious to hear about it! Will you let..." + (show)
@becsbuddy

@liztbnr Have you had your appointment yet?? I’m anxious to hear about it! Will you let me know what you learn?

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The saga continues. GARD informed me that there zero medical people in Arizona who have anything to do with clippers. I went to one six years ago, but was all about continuing with prednisone, period. At the time, I was doing fairly well on it. Fast forward to seven years later, and I am deteriorating. So, I set up an appointment with Dr. Din, and he informed me that he was a general neuro, and could not help me with alternative meds. The more he backed away, the more I cried, I was so hopeless. This was not a ruse, but it seemed to touch him, and he said he would help me find a solution. I had bloods drawn for immune markers (three vials!), and he is going to get with radiology to get me a fresh MRI to see where the brain is. Then, we have a follow-up appointment late August, where we will talk of steps to proceed. Barrows in Phoenix is apparently very highly recommended, so he is checking with them first to see if they can/will see me. He is doing the medical legwork to get me help. Tucson is a dead space when it comes to clippers. Hopeful, not 100%, but we seem to be going in the right direction. Fingers crossed. liz

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 29, 2023
In reply to @liztbnr "The saga continues. GARD informed me that there zero medical people in Arizona who have anything..." + (show)
@liztbnr

The saga continues. GARD informed me that there zero medical people in Arizona who have anything to do with clippers. I went to one six years ago, but was all about continuing with prednisone, period. At the time, I was doing fairly well on it. Fast forward to seven years later, and I am deteriorating. So, I set up an appointment with Dr. Din, and he informed me that he was a general neuro, and could not help me with alternative meds. The more he backed away, the more I cried, I was so hopeless. This was not a ruse, but it seemed to touch him, and he said he would help me find a solution. I had bloods drawn for immune markers (three vials!), and he is going to get with radiology to get me a fresh MRI to see where the brain is. Then, we have a follow-up appointment late August, where we will talk of steps to proceed. Barrows in Phoenix is apparently very highly recommended, so he is checking with them first to see if they can/will see me. He is doing the medical legwork to get me help. Tucson is a dead space when it comes to clippers. Hopeful, not 100%, but we seem to be going in the right direction. Fingers crossed. liz

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@liztbnr What a nightmare for you! I’m going to send you some articles that talk about treatment. (maybe I already sent them! Who knows!)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6472233/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6410928/. Links look the same, but they’re not
I took similar articles to my doctor and said “I want these drugs”!

I have more articles. I’ll try to find some not-so-scholarly ones.
I have my fingers and toes crossed for you.. keep me posted about your meeting in August,OK?

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1 reply
liztbnr | @liztbnr | Jul 30, 2023
In reply to @becsbuddy "@liztbnr What a nightmare for you! I’m going to send you some articles that talk about..." + (show)
@becsbuddy

@liztbnr What a nightmare for you! I’m going to send you some articles that talk about treatment. (maybe I already sent them! Who knows!)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6472233/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6410928/. Links look the same, but they’re not
I took similar articles to my doctor and said “I want these drugs”!

I have more articles. I’ll try to find some not-so-scholarly ones.
I have my fingers and toes crossed for you.. keep me posted about your meeting in August,OK?

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Barrows in Phoenix is world-class. My NP and my neuro will not touch an alternate drug. The neuro says he has no knowledge of clippers or the alternate drugs which he is wary of, due to their cancer-related tendencies. And my NP is just plain skittish. Mayo Scottsdale dropped me due to new billing policies (no Medicare retiree medical plans, only pure Medicare). Which is no big deal, because the neuro there had zero interest in clippers, and gave me a base medical exam and re-prescribed pred. He saw me twice a year. So, cannot demand any alternate drug, not going to happen in AZ, especially Tucson. Will see what happens with Barrows. Yikes. liz

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Becky, Volunteer Mentor | @becsbuddy | Sep 28, 2023
In reply to @liztbnr "Barrows in Phoenix is world-class. My NP and my neuro will not touch an alternate drug...." + (show)
@liztbnr

Barrows in Phoenix is world-class. My NP and my neuro will not touch an alternate drug. The neuro says he has no knowledge of clippers or the alternate drugs which he is wary of, due to their cancer-related tendencies. And my NP is just plain skittish. Mayo Scottsdale dropped me due to new billing policies (no Medicare retiree medical plans, only pure Medicare). Which is no big deal, because the neuro there had zero interest in clippers, and gave me a base medical exam and re-prescribed pred. He saw me twice a year. So, cannot demand any alternate drug, not going to happen in AZ, especially Tucson. Will see what happens with Barrows. Yikes. liz

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@liztbnr Please tell me that you’ve been able to find some help? I do worry about you and the lack of physicians or maybe, uncooperative ones.
Were you able to be seen at Barrows?

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liztbnr | @liztbnr | Oct 1, 2023

November appt in Phoenix. New wrinkle: MSA-C has been decided by neuro brains to be my disease. And it is so convenient, too. No meds for it, it is basically a death sentence. There. I am now in a box that can be identified, unlike CLIPPERS. From onset, you have 5-9 years to live. My onset with CLIPPERS was late 50's, and apparently Mayo must have misdiagnosed me, here I am almost 15 years later. These guys don't listen, and I do wonder how much they know about CLIPPERS. My NP shows more interest than these guys. Nobody wants to draw outside the line, it seems. I am sure Barrows will follow suit.
One good thing: between diet and exercise, I am doing fairly well on pred.
Arizona is not a good place for any experimentation.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 1, 2023
In reply to @liztbnr "November appt in Phoenix. New wrinkle: MSA-C has been decided by neuro brains to be my..." + (show)
@liztbnr

November appt in Phoenix. New wrinkle: MSA-C has been decided by neuro brains to be my disease. And it is so convenient, too. No meds for it, it is basically a death sentence. There. I am now in a box that can be identified, unlike CLIPPERS. From onset, you have 5-9 years to live. My onset with CLIPPERS was late 50's, and apparently Mayo must have misdiagnosed me, here I am almost 15 years later. These guys don't listen, and I do wonder how much they know about CLIPPERS. My NP shows more interest than these guys. Nobody wants to draw outside the line, it seems. I am sure Barrows will follow suit.
One good thing: between diet and exercise, I am doing fairly well on pred.
Arizona is not a good place for any experimentation.

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@liztbnr Oh, I wish someone would/could take the time to help you! I can just imagine how frustrated you are! .
Let’s hope you have good luck at Barrows. Will you be seeing neurologists there?
https://www.mayoclinic.org/diseases-conditions/multiple-system-atrophy/symptoms-causes/syc-20356153
Here is what Mayo Clinic says about MSA-C. Read through it and be prepared with questions! Maybe Mayo Clinic will help you now
I’m glad your feeling OK. How much prednisone are you on? I probably asked you this, but are you being monitored for osteoporosis while on the prednisone?
Will you stay in touch with me? I care about you and your case really has me confused!

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liztbnr | @liztbnr | Oct 1, 2023

I have a gut feeling that Barrows will probably shy away from this whole mess. I'll just resign myself to 8 mg of pred a day forever. I will be seeing a neuro there, but, hey, so what? I have seen neuros over the years and they have been no help at all. I have read about MSA-C, and this is a neat little box to deposit me into. No worries about meds (none for this disease), just go home and wait. Troublesome old woman.

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1 reply
Ame | @astanko | Oct 3, 2023
In reply to @liztbnr "I have a gut feeling that Barrows will probably shy away from this whole mess. I'll..." + (show)
@liztbnr

I have a gut feeling that Barrows will probably shy away from this whole mess. I'll just resign myself to 8 mg of pred a day forever. I will be seeing a neuro there, but, hey, so what? I have seen neuros over the years and they have been no help at all. I have read about MSA-C, and this is a neat little box to deposit me into. No worries about meds (none for this disease), just go home and wait. Troublesome old woman.

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Hi. I don't often chime in just 'cause I have little info to add, but I wanted to say that my heart goes out to you with that diagnosis. However, it seems quite uncertain and you never know! There are so many fascinating treatments and discoveries coming from studying longterm COVID, many of them relate to our weird auto-immune maladies. All we can do in the meantime is make the best life we can with whatever it is we (think?!?) we have. My goal is to find peace and enjoy each precious day with my face in the sunshine (or rain). I have found your contributions to this forum to be very helpful and important, please keep them coming.

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