My MG Story

By Richard Schmittdiel

My MG story starts in late July 2016 when I first experienced double vision. At first I could sort of blink and squint it away. But one day it became difficult and uncomfortable to drive, so I pulled over and asked my wife to drive. I made an appointment with my regular optometrist. He told me to manage the double vision by wearing an eye patch and to seek a diagnosis from an ophthalmologist. By the time I got that ophthalmology appointment in August, my right eyelid had started to droop noticeably. The doctor confidently said that I had palsy of the 4th cranial nerve and it should clear up on its own without intervention. We had already planned and paid for an August trip to Ireland with friends, so I packed my eye patch and off we went. The trip was great fun, but I was starting to have trouble with my gait. My right foot felt kind of “floppy”. It felt like trying to walk while wearing swim fins.

As we approached the end of our two week Ireland trip, it became harder to breathe. One evening after dinner, when we had to walk uphill a couple blocks to reach our hotel, I couldn’t make the walk without stopping to rest and required assistance from my wife and friends pushing and pulling me along as I huffed and puffed. I knew something was seriously wrong, but I was determined to finish the trip and return home because I didn’t want the trip extended by being hospitalized in Dublin. In hindsight, this was evidence that I was having an MG crisis, but at the time I didn’t know anything about MG. I wanted an appointment with my regular Kaiser doctor as soon as I got home from Ireland, but was frustrated trying to make an appointment on short notice, until I said the magic words on the phone to the Kaiser appointment desk, “I’m having trouble breathing.” I was strongly urged to seek emergency medical attention in Dublin, but I insisted I was getting onto the plane for home the next day. Magically, an appointment with my Kaiser PCP opened up for the day after our return home!

When I saw my Kaiser PCP in early September 2016, I was in pretty sad shape. He examined me, and then excused himself from the room to make a phone call. He came back into the room and said they thought I might have myasthenia gravis and that I should proceed immediately to Emergency at the main Los Angeles Kaiser hospital on Sunset and that they were expecting me!

In the ER I was hooked up to intravenous plumbing and a monitor, blood was drawn and I was given the Tensilon test, a diagnostic tool to confirm MG. I still had the droopy eyelid, but when they injected me with Tensilon, my eyelid immediately popped open to normal! The resident neurologist attending me in ER said this was pretty positive confirmation of an MG diagnosis. Alas, the effect of Tensilon wears off in a few minutes. I was admitted to the hospital and stayed there for five days, while my wife Marlen stayed with me constantly, sleeping on a tiny couch in the room. During my stay I was given multiple IVIG infusions, started on prednisone and Mestinon and given respiratory therapy to try to stabilize me. I had a CT scan to confirm that I didn’t have a tumor on my thymus.

Fast forward to early 2018 and I’ve now been on prednisone, Mestinon, Cellcept and Imuran, as well as regular IVIG infusions. My strength and breathing improved somewhat but I still had double vision. Prednisone controls MG symptoms but at a steep price in terms of side effects. Dr. Nazanin Matloubi, my Kaiser neurologist, suggested we try an infusion of Rituxan. My first Rituxan infusion was in March 2018. I began to improve noticeably and the double vision slowly cleared up. At first I was getting Rituxan every three months while I tapered off prednisone. Now I get a Rituxan infusion once every 12 months and take no other medicine for MG. I’m pretty much asymptomatic now and feel fortunate that my symptoms are effectively managed.

My MG Story

by Paul Driskell

On Father’s Day 2011, my daughter noticed that my left eye was drooping and she was afraid I was having a stroke. We went to Hoag Hospital Emergency where after a thorough physical it was determined that I had not had a stroke but should see a neurologist which I did the following week. I was diagnosed with Ocular MG. 

The doctor that I had been referred to said he was leaving his practice and I should seek care at UCI ALS Facility in Orange Calif. I have been treated there since. I was told at the time that if my symptoms did not progress to generalized MG within 2 years, it probably would never advance.

In 2014, I was diagnosed with pneumonia and spent five days in the intensive care unit at Memorial Hospital. The doctors could not find the proper remedy. In retrospect, I now believe that was my first Generalized MG Crisis.

In 2017, I was in Cancun, Mexico and diagnosed with asthmatic bronchitis. Again the normal drugs did nothing. Probably my second crisis.

Then in 2018, I was admitted to UCI MEDICAL CENTER with a diagnosed MG Crisis. There I spent several days in the hospital only to go home and have a relapse. Then several days at St. Mary’s Hospital in Long Beach with an adverse reaction to the prescribed drugs.

Since that time, I have stabilized using IVIG and Prednisone with the normal symptoms of abnormal tiredness and extreme muscle weakness.

I describe it as … I have plenty of energy but no stamina.

I feel sorry for myself until I see how much more others are affected then I feel very fortunate. 

I am also fortunate to have the very best personal caretaker in Connie DiPasqua. Thank you Connie. 

Paul Driskell

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