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CLIPPERS: Looking to connect with others
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?
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@astanko @kristyinoregon
Ame, Kristy,
You may know about it from a Connect post I read some time ago, but in case you don't: There is a book about Clippers, namely A Book on CLIPPERS, by Bill Crum, available via Amazon. The first chapter of the book, starting with his personal experience, is entitled Double Vision. Definitely worth reading.
Don
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3 ReactionsI have polymyalgia rheumatica, Is anyone dealing with this disease ?
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1 ReactionHello @nursetoday4, Welcome to Connect. There are lots of us dealing with polymyalgia rheumatica (PMR). Here's a list of all of the discussions in the Polymyalgia Rheumatica (PMR) Support Group - https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/.
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1 ReactionTHANK YOU SO MUCH FOR THIS INFORMATION; IT IS HELPFUL. CARMON
On Tuesday, August 13, 2024 at 04:26:55 PM EDT, Mayo Clinic Connect < nf+0c0e1434+16760769@n1.hubapplication.com> wrote:
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Hello @nursetoday4, Welcome to Connect. There are lots of us dealing with polymyalgia rheumatica (PMR). Here's a list of all of the discussions in the Polymyalgia Rheumatica (PMR) Support Group - https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/.
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1 ReactionOh my gosh, BRILLIANT!! Bill's blog is what saved me when I was diagnosed, it was the first thing I found that made sense (and indicated that I wasn't going to die). Here's the link for anyone who needs it: https://www.amazon.com/Book-CLIPPERS-Lymphocytic-Inflammation-Perivascular-ebook/dp/B0BRQS83K6
And here's Bill's great blog. Even though I "follow" it, I hadn't heard about the book and it had been awhile since I checked in on him: http://livingwithclippers.blogspot.com/
Oh, I'm so pleased. Thanks so much! I just ordered it.
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1 ReactionHi Everyone, I have question - Have any of you been diagnosed with a pituitary gland cyst? I received Bill Crumb's brilliant book "A Book on CLIPPERS" today and read it in one sitting. Something jumped out at me on page 122. Upon reviewing the findings after a follow up exam he writes
"I did have to read the next line several times to reassure myself though. 'Stable appearance of the benign looking cyst located within the pituitary gland.' What was that about a cyst in my pituitary? No-one told me about that before, probably because I had other things to worry about. If it is stable and has probably always been there, I suppose that's okay!"
VERY interesting. I have one of these too. A quick search tells me the are found in 1 in 10 people (so they're common) and usually asymptomatic. My neuro has showed no interest in it, says it's unlikely to cause any problems. However, it just struck me as odd to have such a specific coincidence. Please do chime in if you've been diagnosed with one of these. I will message my Neuro with this new info and let you know what I find out. I'm not sure if I'm commenting in the right place (to be honest I find this forum structure to really confusing) so please copy this over to where it should go if this isn't the right thread.
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1 ReactionI have another question for the group. What do you think caused your CLIPPERS? Maybe you have no idea, maybe you have a crazy idea, or maybe you really think you know? I have a suspicion, but it comes with a caveat. I was refinishing a built-in wooden cabinet in my house and (stupidly) had my head inside it working with a few different cleaners and then paint for two weeks before my symptoms occurred. The caveat is that it's possible that I noticed a few very slight symptoms a couple of months before that - it's really tricky to parse it out. I'd be very interested to hear from any of you if you have a theory.
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1 Reaction@astanko
Ame,
So glad to see you being as inquisitive and detailed as you are with these posts. It brings out the value of Connect and also illustrates how folks using it need to contribute to and publish their own research for others. Even if finding the right place to post something is difficult when Clippers doesn't have its own section!
As to why I think its Clippers, I'm just taking it as a category doctors currently use to group cases with unknown causes according to how treatment of folks with a certain combination or range of symptoms succeeds with prednisone (at least initially). It may be impossible to ever identify the cause of the symptoms, as much as we and the doctors may like to.
Don
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2 ReactionsI also tampered down 5mg a week to currently at 40mg a week. Other than the vision part I have pretty much the same symptoms, I’d be happy to just start driving again, haven’t driven since middle of June. Arms and legs feel heavy and not 100% responsive.
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1 ReactionWe'll spend 3 hours and had 6 MRIs (3 w contrast and 3 w/o) brain and 2 of the spine.
I can't even pretend to understand the spjne, other than I think I have 3 or 4 bulging disk.
The brain showed some improvement, which UVA dr said to expect a little.
Hopefully the UVA Dr will look at the results in the next day or so and get back to me.
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