I Have Lived with MG Most of My Life

I was diagnosed with MG in 1969 at the age of six.

The long road to a diagnosis

It took forever to figure out what was wrong with me. I would just fall down while I was walking.

I was poked, prodded, and looked at for months before they finally decided on a diagnosis. I was just about paraded around to medical students because I was such a rare case due to my age.

I was placed on Mestinon which helped a little. Then on high dose time release Mestinon that wasn’t any more effective.

A thymectomy put me in remission

In 1978, I had my thymus gland removed and was placed on Prednisone. In 3 years I was in remission.

Remission itself isn’t uncommon but I was told it usually doesn’t last. Mine did, for 26 years!! When it ended at age 43 in 2007, so did life as I had come to know it.

The end of that remission...

I had just married the love of my life 2 years earlier and was advancing at work rapidly. My career ended immediately and I was hospitalized in a myasthenic crisis 13 times in 10 months. Each hospital stay was a minimum of 10 days.

Over the next 3 years, I would accumulate a total of 302 hospital days. My wife had to watch me nearly die a half dozen times in the ICU. Thankfully she stuck with me but paid the price in many ways. We had barely gotten started building our lives and then lost nearly everything due to lost income. Thankfully my disability was approved in 10 months.

Starting new treatments

I noticed that every time I went into a crisis I was treated with plasmapheresis and I improved very quickly. So I asked the doctor if there was the possibility of getting routine pheresis. She was hesitant but agreed.

I was placed back on high-dose steroids and gained 120 lbs in a year. A regimen of Prednisone, Methotrexate, and plasmapheresis leveled me off and I felt decent for about 3.5 years. The steroid use caused my hip joints to fall apart and both were replaced.

Then it started downhill again and at my request, we tried Cellcept, Rituxan, and Immuran with no real improvement. I was forced to use a power wheelchair whenever I left the house.

Could this be the one?

In 2018, I asked the doctor about the Soliris infusions I had read about. She said she would try it if insurance would approve it. The approval took 4 months but it finally happened.

I started infusions in December 2018 and was very hopeful. I had read the results were usually seen in 60 days or so and were significant. Four months went by, and then 6, and then 8 months with no real improvement. My doctor suggested I try something else but said I wanted to give it a full 12 months before I gave up.

Finally in November 2019 something clicked and I was improving rapidly. My strength was returning and lasting longer with every treatment.

Where I am today

Now I’m getting an infusion every 14 days and to be honest, I feel like crap for a day or 2 after but it’s worth it. I’m down to only needing 10mg of Prednisone daily and Mestinon is still at 360mg daily.

After this long story of living with MG for 50 years, my point is DON’T GIVE UP.

Be your own advocate

Do a lot of reading and research on your own. Keep up with clinical trial information and if you think a medication may work for you don’t be afraid to ask your doctor.

Every new medication I tried was at my suggestion. Before my first neurologist retired, she made the comment that she wished her new residents coming in knew as much about MG as I did. You are your best advocate and don’t be afraid to push for what you want.