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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.

dustymi11er | @dustymi11er | Jul 2, 2022

Thanks so much for the quick response. I’m ok just a little overwhelmed. I’ve been fit and healthy all my life and can’t believe how fast I deteriorate. I’m now on a strong course of steroids for the next 3 weeks while my symptoms are monitored. I’m making progress with my walking and swallowing. Still getting double vision in both eyes. This is the start of a long journey I suppose and I believe I have a good set of doctors looking after me. Any info on this would be great as there isn’t much about on line

Thanks again

G

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 2, 2022
In reply to @dustymi11er "Thanks so much for the quick response. I’m ok just a little overwhelmed. I’ve been fit..." + (show)
@dustymi11er

Thanks so much for the quick response. I’m ok just a little overwhelmed. I’ve been fit and healthy all my life and can’t believe how fast I deteriorate. I’m now on a strong course of steroids for the next 3 weeks while my symptoms are monitored. I’m making progress with my walking and swallowing. Still getting double vision in both eyes. This is the start of a long journey I suppose and I believe I have a good set of doctors looking after me. Any info on this would be great as there isn’t much about on line

Thanks again

G

Jump to this post

@dustymi11er I’m so glad to hear from you again, and you’re sounding more positive to boot. Couple of things for you to do/remember: 1. what dose of steroids are you on? A BIG side effect of high dose steroids is osteoporosis (a thinning of the bones). I developed it after approximately 2 months of medium to high dose steroids. Ask your doctors for a DEXA scan which is a specialized x-ray to look at the health of bones. There is a class of drugs, called bisphosphamates, which can help protect the bones. You want to ask for a prescription. And keep up the walking! 2. Learn as much as you can about clippers so you can have discussions with your doctor. And, don’t be afraid to ask questions and advocate for yourself.
3. Keep a notebook of every doctor’s visit and test. This becomes a great reference tool!
Too many suggestions for you? I know you can do it! Keep me posted

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 2, 2022

@dustymi11er I included these articles for you to read. They are Very scholarly, but after reading a time or two, i understood them. The first link is for the rare diseases group at National Institutes Of Health
https://rarediseases.info.nih.gov/
https://pubmed.ncbi.nlm.nih.gov/28386850/
https://nn.neurology.org/content/5/3/e448
Let me know what you think!

REPLY
2 replies
dustymi11er | @dustymi11er | Jul 2, 2022
In reply to @becsbuddy "@dustymi11er I’m so glad to hear from you again, and you’re sounding more positive to boot...." + (show)
@becsbuddy

@dustymi11er I’m so glad to hear from you again, and you’re sounding more positive to boot. Couple of things for you to do/remember: 1. what dose of steroids are you on? A BIG side effect of high dose steroids is osteoporosis (a thinning of the bones). I developed it after approximately 2 months of medium to high dose steroids. Ask your doctors for a DEXA scan which is a specialized x-ray to look at the health of bones. There is a class of drugs, called bisphosphamates, which can help protect the bones. You want to ask for a prescription. And keep up the walking! 2. Learn as much as you can about clippers so you can have discussions with your doctor. And, don’t be afraid to ask questions and advocate for yourself.
3. Keep a notebook of every doctor’s visit and test. This becomes a great reference tool!
Too many suggestions for you? I know you can do it! Keep me posted

Jump to this post

Fantastic advice I feel so much more positive about this in the little time I’ve been on this forum. I’ve 1000 questions I will save for later days as I’m still getting my head around my diagnosis. Thanks so much I see light at the end of this now and I’m truly thankful to have found you. Hopefully your prepared for question overload when I’ve had time to digest what’s going on. I was on a introvinus steroids for 3 days and I’m now taking 60mg per morning until my inflammation levels go down. I’m due another MRI in 3 weeks and an appointment with my consultant on results
Who’d have thought a prolonged bout of hiccups would evolve into this 🤒

REPLY
dustymi11er | @dustymi11er | Jul 2, 2022
In reply to @becsbuddy "@dustymi11er I included these articles for you to read. They are Very scholarly, but after reading..." + (show)
@becsbuddy

@dustymi11er I included these articles for you to read. They are Very scholarly, but after reading a time or two, i understood them. The first link is for the rare diseases group at National Institutes Of Health
https://rarediseases.info.nih.gov/
https://pubmed.ncbi.nlm.nih.gov/28386850/
https://nn.neurology.org/content/5/3/e448
Let me know what you think!

Jump to this post

Many thanks I’ll get into the bones of them in the morning

G

REPLY
dustymi11er | @dustymi11er | Jul 5, 2022
In reply to @becsbuddy "@dustymi11er I included these articles for you to read. They are Very scholarly, but after reading..." + (show)
@becsbuddy

@dustymi11er I included these articles for you to read. They are Very scholarly, but after reading a time or two, i understood them. The first link is for the rare diseases group at National Institutes Of Health
https://rarediseases.info.nih.gov/
https://pubmed.ncbi.nlm.nih.gov/28386850/
https://nn.neurology.org/content/5/3/e448
Let me know what you think!

Jump to this post

Hi becsbudy. I have been trawling the internet to find out all I can about clippers. This keeps popping up which is worrying to say the least. Do you have any knowledge about it

possible link to fatal B-cell lymphoma.

Thanks for your help so far

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 5, 2022
In reply to @dustymi11er "Hi becsbudy. I have been trawling the internet to find out all I can about clippers...." + (show)
@dustymi11er

Hi becsbudy. I have been trawling the internet to find out all I can about clippers. This keeps popping up which is worrying to say the least. Do you have any knowledge about it

possible link to fatal B-cell lymphoma.

Thanks for your help so far

Jump to this post

Hi, @dustymi11er , I, too, read that when i was looking on the internet. I even asked my friend, an oncologist who was treating me, about potential lymphoma. He said not to worry about it, as long as clippers is kept under control. I worked as an oncology nurse for a long time and things like this never came up. Guess i have enough to worry about with keeping track of everything, medications, avoiding infections, etc.
For now, focus on getting better!

REPLY
2 replies
dustymi11er | @dustymi11er | Jul 6, 2022
In reply to @becsbuddy "Hi, @dustymi11er , I, too, read that when i was looking on the internet. I even..." + (show)
@becsbuddy

Hi, @dustymi11er , I, too, read that when i was looking on the internet. I even asked my friend, an oncologist who was treating me, about potential lymphoma. He said not to worry about it, as long as clippers is kept under control. I worked as an oncology nurse for a long time and things like this never came up. Guess i have enough to worry about with keeping track of everything, medications, avoiding infections, etc.
For now, focus on getting better!

Jump to this post

Thanks that’s quite a weight off my mind.

REPLY
dustymi11er | @dustymi11er | Jul 6, 2022
In reply to @becsbuddy "Hi, @dustymi11er , I, too, read that when i was looking on the internet. I even..." + (show)
@becsbuddy

Hi, @dustymi11er , I, too, read that when i was looking on the internet. I even asked my friend, an oncologist who was treating me, about potential lymphoma. He said not to worry about it, as long as clippers is kept under control. I worked as an oncology nurse for a long time and things like this never came up. Guess i have enough to worry about with keeping track of everything, medications, avoiding infections, etc.
For now, focus on getting better!

Jump to this post

Hi Becky hope your well
Although it might be some time I’m wondering how you get on work wise. If it’s not to personal a question are you still able to work with this. I have quite a physical job pulling fibre optic cables underground. It involves quite a bit of driving as well. I love my job and will do anything to keep it. How do you find working when in remission

Thanks

Graeme

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 6, 2022
In reply to @dustymi11er "Hi Becky hope your well Although it might be some time I’m wondering how you get..." + (show)
@dustymi11er

Hi Becky hope your well
Although it might be some time I’m wondering how you get on work wise. If it’s not to personal a question are you still able to work with this. I have quite a physical job pulling fibre optic cables underground. It involves quite a bit of driving as well. I love my job and will do anything to keep it. How do you find working when in remission

Thanks

Graeme

Jump to this post

Well, Graeme @dustymi11er , funny you should ask! I’m retired now, thank heavens. I couldn’t have worked when i first go sick—it took me 3 months just to be normal. I was hit pretty hard with clippers and had to go to rehab for a month. Everyone is totally different.
The biggest problem with autoimmune diseases is fatigue—you have to learn to work with it.
This article explains fatigue and the theory that developed from it.
https://www.brainsupportnetwork.org/explaining-fatigue-the-spoon-theory/
You sound determined to get your old self back. Are you working with physical or occupational therapy while you’re home off work?

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