4 months on Fluoxetine

Back in March my doctors and I decided to try something new. Since mestinon and other similar drugs always made me significantly weaker in just a short period of time, we decided to try Fluoxetine. Mestinon is used for several types of Congenital Myasthenic Syndrome, and works to allow more acetylcholine to reach the receptors in the muscles. Fluoxetine works in the opposite way, blocking acetylcholine from the receptors.

Generally after a week or so of treatment on mestinon, I start to notice I'm getting weaker. The longer I take it, the worse I get. So I started researching on the internet, trying to see if there was anyone else going through that. I found a story about a boy who had been taking Mestinon since he was a young child, and at age 14 was on a respirator and confined to bed. The doctors discovered he had Slow-Channel CMS and switched him to Fluoxetine. Within a month he was able to breathe on his own, and after about a year he was able to play on his high school football team! I was so inspired and hopeful that perhaps this could work for me as well.

After the first week of treatment, I could already tell I was walking more easily. By the end of the second week I was walking up stairs like they were nothing! Over the last 4 months my strength has continued to improve. I no longer have problems breathing, chewing or swallowing. My eyes are more open, my smile is bigger. I can walk farther than ever before. And recently I was able to start running! I haven't run since I was about 8 years old! That was 24 years ago! It was so exhilarating, being able to run. My first run only lasted about a minute. But recently I have been able to run up to 1/2 a mile. This is astonishing for me. I never thought I would be able to run. My hope is to be able to start hiking. I have read about a woman with Multiple Sclerosis who is hiking the 7 Summits (the highest peaks on each of the seven continents). I would love to be able to do something like that! I know it will take time, and a lot of hard work and determination. But it would be worth it.