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 🙂