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I am an 81 year old male and first noticed double vision in late May 2024 while playing golf. I made an appointment with my regular ophthalmologist who also noted some droopy eyelid issues. I had a brain MRI as had a fall a short time ago which did not indicate a problem. We discussed Myasthenia Gravis which I was familiar with as my wife was diagnosed with ocular MG seven years ago. In mid June I had the blood test for MG which came back positive on July 3, 2024
I was fortunate in being able to find an ocular neurologist who I met with on July 18, 2024. At this time there were no other noticeable symptoms. Mestinon was prescribed at four 60mg per day. This significantly cleared up the double vision within a few weeks.
On July 24, 2024 I met with a Neuromuscular specialist. At this time I still had only the ocular issues. The doctor started me on Cellcept, 1000mg in morning and 500mg at night. I also had a CT scan of the thymus which came back with no issues. Starting in mid August several other MG symptoms became very noticeable and concerning. These included difficulty with walking and balance, Dropped Head Syndrome where chin lowers to chest while walking, significant pain along the entire spinal column up into the neck, breathing issues when lying down, and general low energy. These symptoms were really debilitating and I could barely walk 100 feet.
The neuro doctor started me on Prednisone 20mg daily, a week of IVIg infusions followed by monthly infusions through January 2025, and authorized physical therapy on the back and neck. The combination of the above resulted in rapid improvement such that in October 2024 I was able to play golf for the first time in over three months. Over the past several months I have reduced the Prednisone to 2.5mg per day and continued with the Mestinon and Cellcept dosages. In my opinion, one of the major factors in where I am today is back in July I was able to recognize the problem was MG and was able to receive excellent health care from both ocular and muscolar neuologists.
Right now I feel unbelievably fortunate that most of my symptoms are fairly mild particularly after reading many of the heartbreaking stories of others with MG. As with any major disease, you are never really sure if or when the symptoms will recur. (I know this well as my wife is suffering with breast cancer now after having won the battle 22 years ago.) So we keep our faith in God and try to make the best of every day we have together and give support to others.