Mestinon

The same day I’ve been diagnosed with OMG I’ve been prescribed Mestinon 60mg which appears to be the first line of treatment for MG. It contains an active ingredient called pyridostigmine bromide. This helps prolonging the action of the neurotransmitter called acetylcholine affected in MG, whose role (among others) is to transmit nerve messages to muscles and cause them to contract. In other words, pyridostigmine increases the chances of a nerve signal being successfully transmitted to the muscle. 

The beneficial effects of the medication seem to fade away in few hours. This is the reason I have been recommended taking half a tablet three times a day (30mg x 3). I usually take it 30 min. (up to one hour) before the main meals which means 5-6 hours apart. I have read on different discussion boards that some patients take this medication with food or milk as this may help to decrease the side effects. I personally didn’t find this necessary. The side effects did bother me but only during the first days of the treatment. My stomach was terribly upset and I experienced frequent abdominal cramps and diarrhoea. I’ve noticed that this happened especially after I had rich or spicy foods so I needed to adjust my diet and be more careful with nutrition. As a result, I now manage better the side effects of the medication (except some random muscle twitches which are still there since I’ve started the treatment) as my body successfully accommodated the new substance which was expected to improve my condition.  

I did notice significant improvement shortly after I started the treatment. To be honest, few days before I actually started taking Mestinon my vision was much better when I was looking straight ahead (but not down/on the sides). Following my ‘experimentations’ (patch on/off, looking at different angles/distances etc.) I discovered then that I was coping okay-ish without an eye patch in most of the situations except tasks that required some precision e.g. reading, working on computer etc. This occurred after more than one month of almost constant double/blurry vision which was a great relief. 

Unfortunately my joy was not going to last too long as after only a couple of weeks since I started the treatment my vision got worse and I had to stick my eye patch again most of the time. I was feeling defeated but I had no choice… This was probably going to be just one of the many variations which characterise this disease.  I don’t feel that the medication does the trick at the moment at least not in the dosage I was prescribed so I am going to contact my neurologist soon and seek advice. 

My vision continues to play games and does not seem to stabilize after more than one month of medication. Despite predictions rest does not seem to help either as it feels pretty much the same in the morning even if I had a good night sleep. On the contrary it sometimes seems to be better in the evening when tiredness is expected to actually make it worse. It definitely does not make too much sense to me as there is no visible pattern and all this confusion drives me crazy sometimes…