Hi, I want to share my journey with CLIPPERS, as it is again different from what I read above.

I was diagnosed with multiple sclerosis (MS) 2 years ago (2021) after having had double vision (diplopia) for almost a year. Unfortunately the ophthalmologist had no idea to link the diplopia to MS, so I have permanent eye sight loss at distances of 5 meters plus. That meant I could not drive, but luckily I got suitable glasses a year after diagnosis and can drive again.

My only symptom was the diplopia, so the neurologist was rather unsure of the MS diagnosis, which was discussed with me and I agreed with. I had another 'attack' of double vision in August 2021, which was diagnosed as optic neuritis. It which was treated successfully with high doses of cortisone. I had no further attacks, and had no indications of MS after extensive tests in September 2022. I decided to live as if I did not have MS.

I had an 'attack' again in January this year, was treated successfully with high doses of cortisone, and assumed it was optic neuritis again. I had to visit another neurologist and he diagnosed me with CLIPPERS.

I am now on methotrexate, 2.5mg 4 times a week, along with folic acid daily (methotrexate may deplete one's folic acid). I am monitored through blood tests (liver, kidney, etc.). The neurologist do not want to put me on long term cortisone as there are too many side effects.

As I understand, there are less than 1000 cases in the USA. My neurologist has 3 patients, I am the fourth. He says that many neurologists do not know about CLIPPERS.

My neurologist said that he cannot give me a prognosis as there is little reliable scientific research about the illness (it has only been described in 2010 by Pittock et al). I have read about the illness and have a number of article references about it. If someone is interested, you are welcome to contact me.

Kind regards.
Ria Nel