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Diagnosis and beyond

I am not sure if this is where to share this, or even how much to share, so feel free to remove.
I was diagnosed almost 4 years ago, it began when I noticed that my right eyelid was slightly drooping, my initial reaction was to see if I had had a stroke, but there were no other symptoms. It cleared up during the day and did not happen again until the day of a scheduled eyetest three days later. The optician was very on the ball and thought I should see a specialist and arranged a hospital visit within three days. The first test they did was to place a block of ice on my forehead over my right eye to see if anything happened and that seemed to point to MG. I was then sent for bloodtests and an x-ray on my thyroid, which came back clear. I was then given the electric shock testing procedure, thumb to forearm, shoulder to elbow, base of the neck to shoulder and then the neck to forehead, all of which were very unpleasant. This did however confirm that I indeed have MG and was immediately put on Mestinon at a low level. I began to experience my fingers not doing what I wanted them to do for a couple of seconds on my left hand and occasionally on my right hand. I was given an IV of plasma over three days and that gradually eased, but did not stop entirely. I am on several other drugs now including steroids, which we are trying to reduce, I am also on Mycophenolate mofetil (chemo light) and several others, my MG is almost under control, but it has progressed slowly and I have the occasional mild swallowing hesitation when eating or drinking, but again only lasts a second or two, this was happening more and more until they reduced my Mestinon from 5 times per day to three (60mg) tablets per day and gradually cut the steroids from 30mg to 15mg.
The major changes to my life are I can no longer spend more than a half hour working as a Glass Artist as I cannot grip the cutter for long before my fingers cramp up, I can still teach others so not a total bust, but as I was semiretired it is not too bad as I am 73yrs old. I have however developed a cataract which meant I was also seeing double when trying to do closeup work, hard to which line to follow, lol. It is possible that the steroids have induced this, but difficult to prove.
I also get muscles rippling in my legs and back, but there is no pain with that and I only know it is happening if wearing shorts and can see it, or leaning back in my chair and can feel movement in my back. When putting shoes on my toes suddenly decide not to co-operate and curl to the extent where I could wear Sinbad shoes, lol. My biggest gripe, however, is the horrendous cramps I get in my calves when I lie down and they can start cramping almost instantly. When I now go to bed I take a painkiller, Naproxen 250mg, which really helps me get some sleep, this seems to settle things down for a couple of days before I need to take more.
I am not sure if others have had this, but my Neurologist advised me that if I have to have surgery I must inform the surgeon of my MG and ask for them to check the anaesthetic they use will not have a negative impact on my MG as some can make the condition worse. Luckily for me when I had to have some dental work done it was at the hospital where I am under the care of a great Neurologist who spoke with the dental surgeon and sorted that out for her as she seemed unaware of this.
Like everyone I have good periods and not so good periods, but the good periods far outweigh the bad ones and overall my MG has had little real impact on my life as I was semi-retired when diagnosed and as long as I can drive to visit family and friends I am happy with my lot in life.

  1. thank you for taking the time to share. We appreciate you being part of the community. I’m happy to hear your good days outweigh the bad💚. Wishing you more good days ahead. Please reach out anytime, we’re here for you! All my best, Julie (team member)

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