CLIPPERS: Looking to connect with others

I am sorry for all you have been through. I am not 100 percent sure I have Clippers Disease yet but my Neurologist is pretty sure it is. To get to how I got diagnosed starts with a fall. I lost balance on my stairs 3 steps up flipped in mid air and hit my front door and got a concussion. I had prolonged post concussion syndrome and they did an MRI to check for possible brain bleed. What they found was spots on the pons of my brain. The pattern was that of Clippers. I have been through the spinal tap and the elimination of other auto immune diseases and factors that could be other than Clippers. I have constant headaches that feel like bees stinging me in the top middle of my head extending down the back of my head down to the base of my neck. The pain varies and gets worse as the day wears on. My vision is almost always blurred or doubled. If I stand and close my eyes I fall forward or sway greatly. My balance is terrible and it may be the reason for the fall on the stairs in the first place. I don't know if this is a symptom but my taste has changed and some foods taste different. I have tinnitus so bad it sounds like my head is full of cicadas. I am answering you because even if I am not 100 percent sure if this is it or not I would like to talk to people who are also trying to navigate the steroid treatments that bath energize you but at the same time you are beyond exhausted. The lack of sleep. Just not having anyone else who has a clue what you are going through. I know my symptoms are child's play compared to what your going through but surely we are not alone and others can discuss this with us.

Actualmente con 15 mg / 48 h prednisona + bolos cortisona iv (metilprednisolona) + inmunoglobulinas. No sé qué es lo que quieres saber realmente de la gente que esté tomando corticoides. A tu disposición.

@artmom Welcome to Mayo Clinic Connect! I’m glad you found this site and will stay with us! You mention fatigue — have you seen this discussion about fighting fatigue?
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/ It explains how to use/save your energy throughout the day.
Most of us had a hard time with prednisone and experiencing the disease. Keep doing what you’re doing and ask questions!

I am not a doctor, but unfortunately I have CLIPPERS syndrome and I can say that everything you described is very similar to the symptoms I had. I can also say that before the diagnosis and the first steroid therapy, I lost about 15 kg of body weight, because I simply didn’t want to eat anything except some not very healthy food, but I was restricting myself in that as well.

Hi Becky,
I’m currently at a very interesting stage with my illness. For the past month, I haven’t been taking any steroids at all — only various supplements such as Ashwagandha, Rhodiola Rosea, Omega, Curcumin, Alpha-Lipoic Acid, and actually quite a few others. During this whole time, I’ve been stable, and I can feel my energy gradually coming back.

As the mentor of this group, have you heard of similar cases? I should also add that I built this plan myself, without any doctor’s support, so I can’t recommend the same path to anyone. But it seems to me that if my remission continues longer, my case might actually be very interesting from a scientific perspective.

@vlazorenko Well, I don’t think I have ever…! So, you’ve not said anything to your doctor? Well, I would suggest several things: 1. Keep a careful daily journal of what supplements you are taking, 2. Do a head to toe assessment of yourself-brain included, 3. Make a written list of the supplement and carry it in your wallet, in case of an emergency and 4, talk with your doctor about what you have done. They may say, “it’s your life, do what you want,” and they not. Just make sure it’s what you really want to do.
What would make you change your mind?

@becsbuddy , as I mentioned before, I’m from Ukraine and I don’t yet have a doctor in the U.S. In Ukraine, this disease is extremely rare(I`m first or second), and doctors know very little about it. For example, I was told that I would need lifelong prednisone therapy. But while on prednisone, I began to gain weight, my muscle mass was turning into fat, and I realized that prednisone was killing me, just more slowly. So I wanted to find a way out.

I tried several times before, but without success. Then, to be honest, with the help of AI as a guide, I built a plan for slowly tapering corticosteroids — and I succeeded. Previously, when tapering down to 16 mg of prednisone, I would suddenly experience disease symptoms such as diplopia and ataxia.

At this point, I still need to find my doctor here in the U.S. If you might be able to recommend someone in the Bay Area(California), I would be very grateful. But in short, the doctors in Ukraine I’ve spoken with say that this is truly an interesting experience, a unique case. And it’s important to maintain my remission for at least six months before any conclusions can be drawn.

Also, I see that in the U.S. this disease is much more researched, and that many of you are taking more than just corticosteroids.

@vlazorenko I didn’t realize that you are in the US! Welcome! The country isn’t at its best right now, so I hope everything goes well. These are two professional articles that may help the physicians in Ukraine.
https://academic.oup.com/jnen/article-abstract/74/2/186/2614336?redirectedFrom=fulltext
https://pmc.ncbi.nlm.nih.gov/articles/PMC3927899/
I’ll look some more in” my stuff”
When did you come to the US?

@vlazorenko I did some looking but too many choices depending on where you live in the Bay Area. You should ‘Google’ comprehensive medical centers, Bay Area, California. There was lots on there. When you call one of the hospitals, say that you need information from the neurology department. Have a paper and pen ready!
Do you have a car or use public transportation?

I have a car) I feel that in this region it’s really, really difficult without one. And honestly, I got used to having a car back in Ukraine, so for me it’s not a problem at all to drive anywhere in the Bay Area. That’s actually how I found this forum — I started searching for leading places related to CLIPPERS syndrome. I know it was first diagnosed in the U.S., and of course, medicine in the U.S. is at quite a high level. That’s also how I came across the Mayo Clinic and, consequently, you. Oh, I can say exactly — that was on November 25, 2023. However, for the first two months I was in New Jersey.