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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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Dr at University of VA called last Wednesday and said my MRI showed the lesion on brain were clearing of and to start tampering down to 20 mg on my steroids. Was going to redo MRI in Oct and get a plan of action.
Then they called Thursday and said they didn’t see that they also did an MRI of area C and T of Ky spine. That MRI showed a lot of inflammation and with the amount of steroids I’ve been on, that’s extremely odd.
So now I’m not tampering down and they have a scheduled a MRI of my lumbar section. We are also still waiting on my lung biopsy results from late July. The lung Dr sent it to John Hoskins for a second opinion.
So back to the wait and see pattern. But in the meantime my body feels like it on the cusp of going to sleep, tingling and numb head to toes. I keep reminding myself that this is all in Gods plan and timing for me, but I’m also human and want answers.
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2 ReactionsSo very sorry!! Hopefully it turns around for you.. keep up that fight!!
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2 Reactions@jamie72 You are in the confusion state of “wait and see”. It’s an awful position to be in! There’s nothing anyone can do—not your doctors, nurses, friends or family. There are several hospitals involved and that can be positive or negative. It’s negative when different people and places are involved but it’s very positive because several good doctors at good institutions are interested in your case!
What do you think you could be doing to distract yourself while you wait?
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2 ReactionsI’m working everyday the best I can. We also lost our mind and decided to move during this whole mess
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1 ReactionGot results of lung mass from John Hoskins late yesterday. It isn’t Clippers after all. It’s another rare disease called Lymphomatiod granulomatoaia and I’m at a grade 3. UVA is setting me up with their cancer doctors, hopefully soon.
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2 ReactionsThat is a tough diagnosis for sure. But keep in mind that there's a wide variation in outcomes with these rare diseases . The doctors just don't know a lot because there haven't been widespread studies. A breast cancer survivor friend of mine recently had a brain mass discovered on a routine MRI. We spent two weeks thinking it was breast cancer metastasis (fatal at her age). Turns out it's a benign thing she's probably had for years! Hang in there, take things one day at a time, stay grateful, stay hopeful. Best wishes.
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2 ReactionsJamie,
Glad you have a solid diagnosis. I am sorry to hear that it is cancer, but now you can move forward and make a care plan. Keep up
the self advocacy and any positivity you can muster. Sending positive thoughts your way.
Kristy from oregon. 💕
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2 ReactionsHello Everyone,
I have a couple updates, changes to share.
The first is the most frustrating…..about a week ago I got a call and email that my Neurologist has left her practice with no notice or explanation. I really liked her and hope she is ok. I can’t imagine her doing that unless she is having some kind of personal or family crisis. However, I was very sad and felt a bit of panic. I got the call on a Friday, my MRI was scheduled for that Sunday, and they had cancelled my follow up appointment. I cried a lot, then started making calls.
Fast forward to yesterday. I have had my MRI (the other update), which again showed no improvement. So, I decided to use the portal to express my concerns about my treatment plan and ask what to do next. I was not sure anyone would read it, but I knew I had to try. I got a response from another doc in the practice. He said he could take me on as a patient, but he and others in the practice know very little about CLIPPERS. Given that the MRI showed no improvement again and it has been 5 months on tapering Prednisone (60 in early May to 20 now), including 3+ months with Cellcept added, he is suggesting we look at differential diagnosis. He is sending me to another clinic (also part of OHSU) called the MS Center. They will look at all the current information, do some updated tests, and possibly a couple tests I have not yet had, and try to narrow it down. My appointment is for October 9. I am on a waiting list for an earlier appointment, if one comes up.
“Trying to stay positive in Oregon” should be my new screen name. Take care everyone. Kristy in Oregon.
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2 Reactions@kristyinoregon
Kristy,
Sorry to hear about your losing your neurologist. I don't even want to think about how I would feel if the same happened to me. But do stay positive if you can, since this is the best way and happiest way forward when dealing with Clippers. I've gone from two hospitalizations with IV prednisone to 20 mg of prednisone daily, now for 3-4 months, and I feel stabilized. My neurologist thinks that for someone my age, 82, in my good previously great condition, I may be able to stay on prednisone for the rest of my life without adverse consequences. On a different topic, I would recommend to anyone on Clippers seeing a rheumatologist, since I have and I learned that they take a special interest, as a profession, in people with auto-immune issues. Kristy, your response to losing your neurologist was strikingly good: we have to be actively involved in finding the best guidance we can. And you did that! So positive!
Don
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1 ReactionDon,
Thanks for your thoughtful and supportive response to my post. I appreciate your advice, as well. You suggested a rheumatologist, and I am happy to say the new clinic uses a multidisciplinary team approach and has a rheumatologist on the team. Though I am sad and a bit nervous that the prednisone and Cellcept seems not to be working for me, I am looking forward to moving forward with new lenses, a team approach.
So happy that you are feeling stabilized and that you sound confident in your treatment plan.
Best to you in the coming weeks. I will be in touch. Kristy 😊
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