My MG Journey So Far

In June 2022, I developed double vision that was vertical, not side-by-side. I tried to work through it, but in late August 2022, my wife and coworkers talked me into going to the ER. I was exhibiting stroke-like symptoms: slurred speech, difficulty with balance, and trouble swallowing. I even had to hold my head up with my hand to do simple tasks. By that time, I couldn't drive, and my wife and son had to take me everywhere.

I spent three days in the hospital undergoing a CT scan and brain MRI

The tests ruled out a stroke, though they discovered a very minor one I had experienced many years before. I was diagnosed with Myasthenia Gravis (MG) and assigned a neurologist.

On my first visit, she prescribed a 60 mg tablet of pyridostigmine. It kept me steady, or so I thought. On October 7th of that year, I went to her office for an appointment and didn't leave the hospital building for ten days. I was taken to the emergency room and admitted to a ward one step below the ICU—that's how serious my condition was. I couldn't swallow food or liquids, still had double vision, and was having trouble breathing.

They administered IVIg for four days

When they determined the treatment wasn't working, I had IVs in both arms and a feeding tube up through my nose. On the fourth day, when the IVIg wasn't working, they put a catheter in my neck. For the next five days, I underwent plasmapheresis (essentially a blood dialysis) to remove the "bad" cells and put in "good" components to help my system.

I was finally released on October 17th that year. For five months, my food had to be blended so I could swallow it. I had home health care—a nurse visited weekly for a couple of weeks to check on me. I worked with a speech therapist for a few months to help with my speech, swallowing, and breathing, and a physical therapist until early this August to regain control of my neck. My neck still bothers me, but not like it did.

For a time, I was taking 60 mg of pyridostigmine six times a day. When that didn't seem to hold me, I was switched to 180 mg extended-release (XR) tablets three times a day. That held me very well until a couple of months ago when I started to get weaker and some of the other symptoms began to creep back in.

I'm currently prepping for an infusion treatment. I just received two vaccines at the beginning of this month to help build up my immune system against the possibility of getting meningitis. I have two more shots at the end of October and can start the infusions two weeks after that. The infusions will happen approximately every eight weeks until my health improves.