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.

Mentor
Becky, Volunteer Mentor | @becsbuddy | May 2, 2023
In reply to @liztbnr "I have zero plan because no medical folk in Tucson were knowledgeable of or willing to..." + (show)
@liztbnr

I have zero plan because no medical folk in Tucson were knowledgeable of or willing to explore options. Not even the Mayo in AZ were interested. I could weep at how alone I have felt. I have been on my own, doing the best I could, hating my downward spiral and increasing dependence on my husband and friends. Thank you a million times for helping me see maybe a tiny light at the end of a dark tunnel. Liz

Jump to this post

@liztbnr Here is another article you can share with your doctors. Much of it is over my head, but much is understandable.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3927899/
Any neurologist would be interested in reading the article
It’s a tough road, but I know you can do it!
Becky

REPLY
2 replies
liztbnr | @liztbnr | May 2, 2023
In reply to @becsbuddy "@liztbnr Here is another article you can share with your doctors. Much of it is over..." + (show)
@becsbuddy

@liztbnr Here is another article you can share with your doctors. Much of it is over my head, but much is understandable.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3927899/
Any neurologist would be interested in reading the article
It’s a tough road, but I know you can do it!
Becky

Jump to this post

Thank you so much. This is such a mysterious disease. My former boss teased me about how I was always so different!

REPLY
liztbnr | @liztbnr | May 2, 2023
In reply to @becsbuddy "@colleenyoung @liztbnr Yes, I took the articles with me to the doctors and told them that..." + (show)
@becsbuddy

@colleenyoung @liztbnr Yes, I took the articles with me to the doctors and told them that I wanted to try rituximab. I kept pushing and then when I had a downturn, they agreed and i got 2 doses of rituximab. Make an appointment with your rheumatologist and tell them that you’re fading away from this disease and you know there is treatment. Tell them you want to try rituximab and give them the article.
There must be some large medical centers in Tucson, so you can also call them. Enlist your husband’s help in making calls. And try Mayo Clinic again!
Think you can become your own advocate? I know you can!!

Jump to this post

Will find out when I call a rare disease center in MD. Going to arm myself with everything I can, since my own doctor is averse to this disease's existence and any alternate drug possibilities. She is fine with normal stuff, but shies away from CLIPPERS. She took over from my recent doctor, and she is underwhelming.

Mayo Clinic turned me out, as I had Medicare supplemental coverage and they only do Medicare patients. Sigh.

REPLY
liztbnr | @liztbnr | May 2, 2023
In reply to @colleenyoung "@liztbnr, it can be so hard to advocate for your care and find a doctor who..." + (show)
@colleenyoung

@liztbnr, it can be so hard to advocate for your care and find a doctor who will work with you. You're alone in all this despite have the support of your husband and family. You don't want to be a burden. I get that.

I agree with @becsbuddy that the article she shared is excellent:
- Effective treatment of CLIPPERS with long-term use of rituximab https://nn.neurology.org/content/5/3/e448

Becky, I know that, like Liz, you had a long road before getting treatment that helped. Did you bring articles like this one to your doctor to help advocate for your care?

Liz, might sharing this article with your doctor open a new discussion about treatment options besides prednisone?

Jump to this post

No discussion with present medical bobblehead, as she hates this mysterious disease so she is distant. I will most likely have to find another practitioner in resolving this issue. I have a rare disease source that I will call in MD. Someone else with CLIPPERS

REPLY
1 reply
liztbnr | @liztbnr | May 2, 2023
In reply to @liztbnr "No discussion with present medical bobblehead, as she hates this mysterious disease so she is distant...." + (show)
@liztbnr

No discussion with present medical bobblehead, as she hates this mysterious disease so she is distant. I will most likely have to find another practitioner in resolving this issue. I have a rare disease source that I will call in MD. Someone else with CLIPPERS

Jump to this post

turned me onto this. So, am gathering up articles, names and phone numbers to find resolution. Many thanks for information and words of encouragement. I used to run, but this race is worse than any course I ran. liz

REPLY
gina5009 | @gina5009 | May 3, 2023

I have never heard of your illness. What a horrible interesting disease. I sincerely hope they have found an answer for you. I was extremely lucky, I just started having horrible pain in my jaw. I thought it must be a tooth, but as soon as I described the pain to my doctor he knew exactly what was wrong. Trigeminal Neuralgia. They
tell me that the Myelin covering of our nerves wears out as we get older and allows the nerve to be exposed. If it is near a blood vessel it rubs against that blood vessel and causes the pain. Thank God again, we have found a medication that gives me relief of the pain, and baby teething medication also does the job. I will keep you in my prayers and ask God to find you a cure.
Gina5009

REPLY
liztbnr | @liztbnr | May 4, 2023
In reply to @becsbuddy "@liztbnr Here is another article you can share with your doctors. Much of it is over..." + (show)
@becsbuddy

@liztbnr Here is another article you can share with your doctors. Much of it is over my head, but much is understandable.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3927899/
Any neurologist would be interested in reading the article
It’s a tough road, but I know you can do it!
Becky

Jump to this post

I called GARD and they were very kind and helpful. Gave me names of three CLIPPERS specialists for a doctor-to-doctor consult in case my GP agrees to work with them in prescribing a steroid-free alternative for me. June 2 appointment. liz

REPLY
1 reply
liztbnr | @liztbnr | May 4, 2023

I would recommend GARD (Genetic and Rare Disease) organization in Maryland. They were very kind and informative and provided me with a list of three CLIPPERS specialists that will provide a doctor-to-doctor
conversation between one of them and my reluctant GP when I see her on June 2. I am making copies of all things CLIPPERS for her. Here's hoping... lizbnr

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | May 4, 2023
In reply to @liztbnr "I called GARD and they were very kind and helpful. Gave me names of three CLIPPERS..." + (show)
@liztbnr

I called GARD and they were very kind and helpful. Gave me names of three CLIPPERS specialists for a doctor-to-doctor consult in case my GP agrees to work with them in prescribing a steroid-free alternative for me. June 2 appointment. liz

Jump to this post

@liztbnr Wow!! That’s so great!! The doctor may want to repeat all the blood tests, MRI’s, whatever, so they have a really good picture. They may even want a brain biopsy and spinal tap. I had both and they were no big deal. Took some Valium!
Now, you have to come up with all possible questions that you want answered. Write them in your journal with the answers. If you’re not great at note-taking, use the recording device on your phone (get the doctor’s permission!). You can listen later and take notes again.
I’m so excited for you!! Will someone go with you as your 2nd set of ears?

REPLY
2 replies
liztbnr | @liztbnr | May 5, 2023
In reply to @becsbuddy "@liztbnr Wow!! That’s so great!! The doctor may want to repeat all the blood tests, MRI’s,..." + (show)
@becsbuddy

@liztbnr Wow!! That’s so great!! The doctor may want to repeat all the blood tests, MRI’s, whatever, so they have a really good picture. They may even want a brain biopsy and spinal tap. I had both and they were no big deal. Took some Valium!
Now, you have to come up with all possible questions that you want answered. Write them in your journal with the answers. If you’re not great at note-taking, use the recording device on your phone (get the doctor’s permission!). You can listen later and take notes again.
I’m so excited for you!! Will someone go with you as your 2nd set of ears?

Jump to this post

It's my baby, so I will take notes. At least I have a start. liz

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.