Hello All, I am new to this forum and would like to share my story so far.

In January 2017 I started experiencing double vision late in the afternoons and into the evening. I work on a computer all day and at first I thought that I was just overtired; but, over the next two months it started to happen earlier in the afternoons getting progressively worse as the day went on. Luckily, I have never had any problems with droopy eyelids. I made an appointment with an opthalmologist, who diagnosed intermittent diplopia and said it could be due to something going on in the brain or potentially MG. He sent me for an MRI which came back negative and then referred me to a neurologist. I was tested for AChR antibodies which came back negative. The neurologist referred me for an sfemg and I finally got an appointment 3 months later.

In the meantime, I started having problems with swallowing, mostly with liquids going down the wrong way and choking on my own saliva. My hands and arms got weak in the evenings and I would drop things and have problems when doing things like chopping veggies and washing dishes.

The neuromuscular specialist performing the sfemg test had problems with getting responses from the muscles in my forehead, tried a muscle in my arm but couldn't get what he needed there either. Finally he tried a different place on my forehead and was able to do the required 20 individual recordings.  The results of this test were negative too.

Following up with the neurologist, he felt that the symtoms I am having are classic MG and decided he would treat me as if I had MG but did not formally diagnose me with MG. He prescribed mestinon 60mg 3x per day.

For the first week I took a half dose (30mg 3x per day) and moved up to the full 60mg on day 8. What a difference it has made. I did not realise how weak my arms and hands were until I started taking the mestinon, it was good to feel mostly normal after so many months. I have been taking mestinon for 3 weeks now and my double vision is much better, I still get double vision but no where near as badly as I was previously. The biggest difference has been to my swallowing symptoms and the weakness in my arms and hands. I rarely have problems with liquids now and my hands and arms no longer feel weak for the 3 to 4 hours that the mestinon works. The effects of the mestinon starts wears off after about 3 hours and is pretty much gone after 4 hours. I take the mestinon every 6 hours (3 x a day) so I do have a couple of hours in between doses where I feel some weakness for a short while. I did decide to miss one dose to see whether I would still feel weak if I wasn't taking it. A couple of hours after missing a dose my arms and hands began to feel heavy and sluggish, the double vision came back with a vengence and I was again coughing after drinking anything. Took the next dose on time and it took a little longer for it to work but it did work. I didn't realise how weak my hands were until I did this short experiment; when you live with feeling weak everyday you begin to think that it must be normal and its all in your head.

I don't experience too many side effects as long as I eat something before taking the mestinon, and then any side effects are very mild. I will be having a follow up visit with the neurologist in January 2018. 

It is frustrating not to have a formal diagnosis, you would think if it looks like a duck, quacks like a duck it must be a duck. It is good to have a neurologist that is willing to treat it like MG even if he won't say that it is MG. I am just happy to be feeling more 'normal' again.