The first symptom I experienced of Myasthenia Gravis was while I was on vacation in August 2013 on a hike of a mile and a half in beautiful 70 degree weather. I was worn out after less than half way through, which seemed odd. I was also having neck problems, having to prop up my head with the palm of my hand when I got fatigued. I did not tell people about the neck problems because I was embarrassed that I couldn’t even keep my head up!
As months went on I had unusual symptoms of fatigue. When mowing my small front yard I would have to stop and rest before finishing. I didn’t understand what was going on. I was 67 years old but in good shape. A year ago, I could have worked all morning without stopping to rest.
I told my general physician I had “shortness of breath” when doing simple physical things. I explained it was a “step change,” a sudden change. He dismissed that it was a sudden change and said it was typical of someone my age with a desk job not getting sufficient exercise and that I should take 20 minute walks after dinner at least 3 times a week. So, I started walking as suggested and really began to struggle. (Note: Telling the Dr. I had shortness of breath was misleading — the real problem was I had muscle weakness which led to shortness of breath. MG is not a cardio-vascular or lung problem, it is a muscle function problem!)
I started to wonder if maybe I had a heart problem. The cardiologist did the full series of tests which showed I had basically a healthy heart, no change from when tested 5 years previously. I was perplexed.
We went on a vacation in April 2014 where we were up in the mountains and I could not walk very far without stopping to rest which I attributed to altitude sickness. The only problem was, I also had this “altitude sickness” at sea level!
My wife and I went to the gym 3 times a week where I did 6 – 8 basic exercises. I would be finished in about 15 minutes but would then have a real struggle with just walking back to the car! I kept saying, “I know something is wrong with me!”
It got to the point that I had to stop and rest when walking about 50 yards from my car to the office door. I had to support my head and neck when walking. My speech started to slur when I tried to pronounce multi-syllable words, and like Porky Pig in the comics, I would stutter and then change to a shorter word! My vision was fine when driving into work in the morning, but would get blurred when driving home after a day at work. I ended up losing about 20 pounds because my swallowing became an issue and I was afraid of choking, so I would only eat half of the meal.
I was masking most of my symptoms because I didn’t want people to think I was some kind of wimp/whiner. Turns out this greatly impeded the diagnosis because the doctor only got a partial picture of what was going on. Another impediment to diagnosis was that I did not know what MG was. If I had heard about it and its symptoms, I might have asked enough questions for it to have been diagnosed earlier.
Finally one morning, I called my doctor’s office and said I was desperate. The nurse said to check into the hospital, which I did. The doctor did these standard checks like having me squeeze his fingers and push up with my legs against resistance. I could show reasonable strength for a short time period but my strength quickly waned, however, that did not come out in these short tests. In this hospital stay my doctor ordered the blood test that led to diagnosing MG.
After MG was diagnosed (June 2014), I immediately had a 10 day stay in the hospital to receive IVIG and prednisone.
I slowly got better. My high dosage of prednisone was slowly reduced down to 15 mg per day, and together with mestinon, I continually got stronger. My symptoms were reduced to where I could eventually walk a mile with only stopping to rest once, as long as I didn’t do it in the heat of the day! My head drooping was minimal and I no longer had blurred vision. My symptoms were then tolerable and as long as I didn’t push it too much my life was fairly close to normal. However, it didn’t last.
About 15 months after diagnosis and treatment my symptoms worsened. It steadily has gotten worse to where now I can only walk about a city block without stopping to rest. When I get tired my legs get really weak and my head droops. My vision get blurred if I read for an extended period.
I just started with Rituxan. I had two infusions (2 weeks apart) in May (2016) and am now waiting to have the next round 3 or 4 months later. It takes over a month to start feeling benefit from Rituxan — hoping for good results!
At least now, I know that something WAS wrong and I know what that something is.