Yesterday when I was chatting to my colleague who has the son with congenital myasthenia, she raised an interesting point. While I was expressing my frustration about the way my eyes felt and looked, she told me that many of the young people with myasthenia get a dose of mestinon (pyridostigmine) during the night.
The drug, which controls the rogue neuro-transmitters for between 5-6 hours, can make a difference when symptoms are bad. By building it up from morning until night, I often see my eyes improve and my other symptoms diminish within the course of the day. Then to go for 8-9 hours without during the night can make it feel like you are starting from scratch the next morning.
My colleague told me about the two different options – a slow release dose which you can take before bed or a normal tablet which you could set an alarm to take during the night. The second option means a broken sleep, which isn’t ideal as symptoms can worsen when sleep deprived.
Either way, I’ll have to wait until the summer to speak to my consultant about it during our next appointment. That will be the first of many things to put on the list over the coming months.