Trying Fluoxetine

Several months ago I started doing some research online to see if anyone else out there was experiencing similar negative reactions to Mestinon and 3,4 DAP. What I discovered was astounding to me! There are different causes of congenital myasthenic syndrome! I couldn't believe I had never heard about these other forms of CMS.

***I started this post 2 years ago in '09, so it's hard to remember all that I was going through at the time. So instead of trying to recreate what I might have been feeling or thinking then, I'll go ahead and pick it up now with some of what I have learned.


The first thing I learned was that Congenital Myasthenic Syndrome can affect different parts of the synapse. (The synapse is the space between nerves that transmits an impulse {like a message} from one nerve to the next) CMS may be pre-synaptic, post-synaptic, or synaptic, which means the defect may occur in any of those areas. Then there are subtypes, including slow-channel (meaning the gateway to the synapse opens/closes too slowly, letting too much of the chemical in) or fast-channel (meaning it opens/closes too quickly and the chemical can't get through). Mestinon works great for fast channel CMS because it keeps the channel open longer. But this is also why it can be disastrous for people with slow-channel CMS. Too much mestinon causes extreme weakness.

Once I read this, I immediately concluded that I must have slow-channel CMS. My previous disastrous experiences with Mestinon led me to believe I needed whatever the opposite treatment would be. I read about two drugs- Quinidine and Fluoxetine.

Quinidine is a drug that is used primarily for heart patients. Because of the warnings, and because my neurologist at the time had not prescribed it before, we opted for the less dangerous Fluoxetine- better known as Prozac.

It seemed strange to be taking an anti-depressant to help me walk, but I was willing to try anything. My experiences with Fluoxetine are described in a couple of other posts.

Unfortunately, my self-diagnosis was wrong (and also unfortunately, my neurologist did not have me undergo further diagnostic tests to confirm the correct form of CMS). So I spent almost two years on Fluoxetine, and my condition continued to decline. I almost could not walk at all, and was feeling like I would never be able to walk again, when I moved to North Carolina and went to Duke Medical Center.

My new neurologist took some blood from me and sent it off for DNA testing. And what they found was a type of CMS that I was not familiar with. I had a defect in my DOK-7 gene. The good news was that they were having some success treating this form of CMS with Albuterol, which has been used for decades to treat asthma.

Throughout this ordeal, I have learned that getting the correct diagnosis is absolutely crucial. It is impossible to know based on the symptoms which type of CMS you have. Even people with the same cause may have varying degrees of severity and will react differently to the medication. I'm so happy to finally be on a medicine that works, and I am looking forward to a very active future!