Spinach…it worked for Popeye!

How nice it would be if it were that simple for Gary! Now that we had a diagnosis the next step was treatment. As I mentioned in a previous blog, Myasthenia gravis is called the Snowflake disease because it is different for everyone… different symptoms/different treatments. It is a trial and error situation for patients diagnosed with MG.

They immediately started Gary on high doses of prednisone followed by ordering IVIG infusions. IVIG works by altering the immune system and neutralizing or destroying damaging antibodies. By the fifth day we thought we were seeing some improvement…the phlegm wasn’t as bad and he said he felt more “connected”. However, by the following Wednesday he was beginning to have issues with balance and swallowing again. The doctor did a CT to check his thymus gland. Celebration was in order when it was discovered it had shrunk as it should and was simply fatty tissue. Another positive in his favor.

We applied to the Methodist Neuromuscular Institute in hopes that one of the doctors there would see Gary. On June 5, 2020, we received word that he had an appointment! We felt we won the lottery and knew in our hearts answers would soon come!

As of today, February 24, 2022, Gary has tried CellCept, Imuran, plasmapheresis, Solaris, and IVIG. The only thing allowing him to function right now are the IVIG infusions which he receives over two days every two weeks, Mestinon which he takes every 3 hours and then a long lasting one at bedtime, and prednisone. He continues to have issues with balance, his eyes (especially his right one) are refusing to remain focused and open, fine motor skills aren’t cooperating, swallowing is becoming more difficult, and…..Elmer Fudd has begun to make appearances again. Regardless, he continues to work his consulting job while maintaining a smile and telling anyone who will listen that HE….IS….BLESSED.