@suec147 @becsbuddy

Sue, I moaned as I read what you said about years of searching for the right medication and I gasped when I read about your right eye blindness and your recent fall. You poor dear. I wish I could help immediately, but maybe something I say about my own condition and experience might lead to something of assistance to you.

My diagnosis of Clippers came on May 3rd, after my neurologist, who focuses on auto-immune issues, had tested for and ruled out a variety of possible diagnoses that would be possible for someone with a demyelination disease (e.g., MS, NMO). My symptoms, which began with left eye vision impairment, and the hospitalizations that ensued, only began last September, and finding the right prednisone regimen has been a major issue and question. Based upon earlier changes and their results, I am now on 20 mg prednisone per day, every day, plus gabepentin, while pressing forward with OT and PT. Some consideration is being given to shifting me to what Becky has started, rituximab infusions.

I’ve been very active in exploring Clippers, for example by joining Mayo Clinic Connect and doing online investigation and buying Bill Crum’s A Book on CLIPPERS. My neurologist has lined up an appointment for me in 10 days in NYC with a specialist well versed with Clippers for a second opinion or evaluation. I have also been invited for consultation anytime with a Mayo Clinic doctor in Minnesota.

Given all this, I have to ask if you are comfortable with your neurologist. Even though she gave you a Clippers diagnosis way back in 2017, is he/she an autoimmune focused neurologist? Have you received a second opinion or evaluation? Has your bone density been monitored regularly, at his/her direction?

A suggestion for using MC Connect: if you plan to write something for more than a few paragraphs, and maybe you might want to digress to look up something to include, do it off MC Connect, in Word, or Pages, or something on the side, then copy and paste it into MS Connect. I didn’t do this and lost everything I wrote earlier this afternoon when writing to you!

Hope you are feeling at least a little better now, Sue, than when you first posted a few days ago.

Don