[waynecis-42]

Hi Jodi, my story is similar to yours as it started out with my eyes. At 70 years old I have my own business that I work on from home. I spend all day looking at drawings of buildings, a lot of small lines and text.

When mine started I was looking at blue prints and double vision set in. Many years ago I worked in emergency rooms and I remember that is one of symptoms of a stoke.

My wife was in an important meeting that she was chairing. Oh well, I called her and said that I needed to get into an eye doctor like now.

She left her meeting, after a few calls we found a doctor that could see me the same day. However, I was disappointed in her finds. After a short exam and a few questions she told use that one of the arteries to the eye muscle stopped flowing and a nerve to the eye muscles died. She instructed us to come back in six to eight weeks. No MRI to rule out a stroke.

On the way home, I was thinking stroke and we don’t know if anything else was damaged.

Six weeks later I saw a Neuro-Ophthailologist. He did completed a thorough exam and had some blood drawn. A day later it was confirmed that I have MG. I still had double vision and couldn’t get into see a Neurologist for another month. The day that I started the Pyridostigmine the double vision cleared up.

A year and half later, I’m still working part-time and about to start Ultomiris infusions.

What changed in my life is my bucket list. There are a lot of places that I wanted to travel once I retired.

[Jodi]

That must’ve been incredibly overwhelming at the start, especially with the fear of a stroke and not getting clear answers right away. Adjusting your bucket list and holding onto those dreams says a lot about your strength and perspective through your willingness to adapt. I wish you the very best with Ultomiris and hope it brings some real relief. -Jodi, Patient Advocate