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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.

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Becky, Volunteer Mentor | @becsbuddy | 1 day ago
In reply to @vlazorenko "@becsbuddy Hi. In fact, it was a very long journey, and I can’t say it was..." + (show)
Profile picture for vlazorenko @vlazorenko

@becsbuddy Hi. In fact, it was a very long journey, and I can’t say it was an easy one, but I’m very satisfied that I went through it. Now I can say that, basically, as I mentioned before, I’m taking only supplements and not taking any hormonal medications.

During the process of tapering down prednisolone, I lost 30 kilograms, and for the past 5 months my weight has stayed within the same range. I can say that many of the supplements I used were aimed at reducing stress and restoring my adrenal function.

Of course, everyone’s situation is unique. I’m simply sharing my personal experience and do not recommend anyone to go through this, at the very least without medical supervision. I can say that I was on a dose of 24 mg of Medrol and reduced it by 2 mg every two weeks. When I reached 5 mg, I reduced it by 1 mg every two weeks.

Also, the table does not clearly show everything I was taking, because along the way certain things bothered me more, and I added specific supplements accordingly. In reality, I used even more than what is described there, but these are the main ones.

Additionally, for anyone who has trouble falling asleep, I can recommend (based on my own experience — I am not a doctor) glycine. In powder form, I took one teaspoon before bed, and it helped me fall asleep very well and get high-quality sleep.

FYI translated with AI )

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@vlazorenko You’ve said that you take lots of supplements. Do your doctors know? I advise you to let your doctors know of everything you take. If there is ever a concern with your health, you don’t want to find out that your supplements are to blame. I’m not saying that you’re wrong just be cautious and safe!

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vlazorenko | @vlazorenko | 1 day ago
In reply to @becsbuddy "@vlazorenko You’ve said that you take lots of supplements. Do your doctors know? I advise you..." + (show)
Profile picture for Becky, Volunteer Mentor @becsbuddy

@vlazorenko You’ve said that you take lots of supplements. Do your doctors know? I advise you to let your doctors know of everything you take. If there is ever a concern with your health, you don’t want to find out that your supplements are to blame. I’m not saying that you’re wrong just be cautious and safe!

Jump to this post

@becsbuddy Hello. Yes, of course, my doctors are aware of all of this. I’ve had a lot of different tests done, and it seems that everything is normal. However, I can say that this therapy has kept me — and is still keeping me — feeling well, but the MRI did show inflammation. I will be visiting the Mayo Clinic again next week, and although I will not be having an MRI, perhaps we will decide something regarding treatment.

REPLY
Profile picture for Alta Net
Alta Net | @altabiznet | 20 hours ago
In reply to @vlazorenko "@becsbuddy Hi. In fact, it was a very long journey, and I can’t say it was..." + (show)
Profile picture for vlazorenko @vlazorenko

@becsbuddy Hi. In fact, it was a very long journey, and I can’t say it was an easy one, but I’m very satisfied that I went through it. Now I can say that, basically, as I mentioned before, I’m taking only supplements and not taking any hormonal medications.

During the process of tapering down prednisolone, I lost 30 kilograms, and for the past 5 months my weight has stayed within the same range. I can say that many of the supplements I used were aimed at reducing stress and restoring my adrenal function.

Of course, everyone’s situation is unique. I’m simply sharing my personal experience and do not recommend anyone to go through this, at the very least without medical supervision. I can say that I was on a dose of 24 mg of Medrol and reduced it by 2 mg every two weeks. When I reached 5 mg, I reduced it by 1 mg every two weeks.

Also, the table does not clearly show everything I was taking, because along the way certain things bothered me more, and I added specific supplements accordingly. In reality, I used even more than what is described there, but these are the main ones.

Additionally, for anyone who has trouble falling asleep, I can recommend (based on my own experience — I am not a doctor) glycine. In powder form, I took one teaspoon before bed, and it helped me fall asleep very well and get high-quality sleep.

FYI translated with AI )

Jump to this post

@vlazorenko

Thank you for sharing. Hoping to hear that you are in long lasting remission.

I have similar symptoms post stem cell transplant for scleroderma, that have not been diagnosed yet with any specific neurological condition. Considering following your supplements chart as a starting point. Please keep posting your experience. Best wishes

REPLY
Profile picture for Alta Net
Alta Net | @altabiznet | 20 hours ago

I have similar neurological symptoms of dizziness, off-balance, weakness, some episodic double vision post stem cell transplant for scleroderma, which was administered with chemo/radiation and high-dose steroids. I have not been diagnosed yet with any specific neurological condition. At first, it was considered post-transplant fatigue, which was supposed to correct itself with 6-12 months. My symptoms are only getting worse 14 months post-transplant. There must be a reason for that. It looks like I have long-lasting post-transplant neurological deficits.

How does the CLIPPERS start? Did anyone have chemo/radiation before CLIPPERS started? Any insights are appreciated.

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