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CLIPPERS: Looking to connect with others
Autoimmune Diseases | Last Active: 2 days ago | Replies (308)Comment receiving replies
Kristy, thanks for your post, which is the most extensive summary of a Clippershead's medical path I have seen. Since Mayo Clinic Connect is a purely social media-like exchange platform for sufferers of all kinds of conditions, without any moderation or intervention by anyone medically-certified (unless they are also suffering something), your summary may be more than needed. I could be quite mistaken about this. You'll have to judge it yourself.
I was diagnosed as being a Clippers member on May 3, 2024, one day after you! My symptoms began in September 2024 and began with extensive visual impairment of my left eye and parathesis of my left hand before extending to parathesis of the left arm, left chest, left leg and left foot, and the same with my left jaw and the left side of my face. The left side of the body ones have softened a little and vision in my left eye improved greatly. I've gone through two hospitalizations where steroids delivered by IV were the main and successful treatment. I am now on 20 mg prednisone, with my neurologists planning to move me off them in the months ahead.
I had an intensive consultation and evaluation of my complete medical record a few days ago with a second opinion neurologist at the NYU Langone MS Center. This doctor said my condition was complex and puzzling. He thought a diagnosis of Clippers might not be accurate, even given my responsiveness to steroids, because eye impairments are extremely rare amongst those with Clippers. He is proceeding with new blood tests and procedures to help determine if something else is causing some or all of my symptoms. I found his evaluation to be extremely productive and helpful.
Might this apply to you? Who knows. You had or still have visual field infringements too, although perhaps less profound that mine. Or maybe you and I are the "extremely rare cases" where Clippers patients have had eye problems, making Clippers the right diagnosis.
In any event, welcome to the Clippers portion of Mayo Clinic Connect. Like you, I am not sure how aspects of this social platform works, but if it proves of benefit, as it definitely has for me, it is worth the uncertainty. Don
Replies to "@kristyinoregon Kristy, thanks for your post, which is the most extensive summary of a Clippershead's medical..."
@donnyboy
Hi Don,
Thank you for sharing above. I am very interested in your doctor's opinion.
I also have visual problems. My relapses seem to be attacking my eyes latelye. My right eye is completely blind for about a year or so. My left eye has had inflammation several times, which is responsive to steroids. I usually get 5 days of 1000mg steroid infusions, followed up with a steroid tapers, slowly, I start at 60mg down to 20mg where I stay normally.
My left side of my body (head to toe) was damaged by one of my relapses and is functionable, but I would say probably 80%.
Currently, I am back working with my Neurologist for a medication for nerve pain/numbness. I have been on Gabapetin, Lyrica, Nortryptiline, all of which I had extreme mood side effects. I could not take any of them. We are going outside of the family of thos meds and I am goin to try Cymbolta. Hoping it is a drug that works and works with me!
I have no feeling from a little above the stomach to my toes and my hands.
Summer and the heat are rough. It's extra hard becuase I like to be outside any chance I get.
Hope you are having a good day!
Sue
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Hello Don,
Interesting that our diagnosis day was just one day different in the same year. Thanks for your advice on the content I posted. I DO need to consider that, for sure, since I have not been a part of social media quite like this before. With regard to my vision, I have a long-term doctor of ophthalmology that I see every 3 months. He knows my eye health well and is working hard to learn what he can about CLIPPERS, while keeping other possibilities in mind. He does regular eye pressure checks and field vision assessments, very thorough. In a January 2024 article in the Journal of Neurology (Li, et al.) indicated that "diplopia" (double-vision) was reported in 51% of patients. My doctor says that "oscillopsia" (which I experience) is very similar to "diplopia", in that they are both two-eye alignment issues. Now that I have said that, I am unsure if I should refer to articles when I am posting to this forum, since I am not a medical professional. However, the article is very good and current, so I lean on it as I am making decisions for my situation.
I am glad to hear you are looking into that second opinion. I think it is completely possible for people to have CLIPPERS, yet have other things going on that are not CLIPPERS. I also consider my diagnosis of CLIPPERS as an "initial" diagnosis, that may not be complete or final. In the article I mentioned above, people seem to be responding positively to Prednisone within several weeks, I have not noticed improvement, but worsening or increase in symptoms. I wonder if symptom sometimes get worse before they gets better, or if I am just slow to respond. I think my Neurologist added Cellcept to increase the efficiency of the Prednisone, so perhaps I just need to be more patient. I guess time will tell.
Thanks for your response to my post. I am looking forward to having access to this platform as I go through this journey, as it seems less lonely and overwhelming when I can hear about others' experiences and interact with them. KRISTY 🙂