Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
My neurologist is pretty sure I have MG affecting my eyes and she is suspecting generalized MG but has not been proven yet. I am seronegative. Eye muscle was mildly abnormal in single fiber EMG and forearm had a mean average that was a little high but no abnormal individual readings. SFEMG was done almost a year ago. I experience a lot of arm heaviness on and off throughout the day when reaching for paper towels, doing laundry, washing hands, washing dishes, and sometimes when doing nothing. My neuro calls it atypical arm symptoms. So can the heaviness be actual muscle weakness? I have also recently noticed increasing trouble using hands and fingers at times. I drop things often and can't open bottles and jars as easy as I used to. I would like to hear what other MGers feel when experiencing muscle weakness? I have read that the weakness can feel different from person to person, so I'm still not sure? Is it no feeling at all except for the muscle just giving out and you can't lift the arm or leg, or you simply just fall? Please share what you feel. Thank you.
Generally speaking, MG is considered to be a condition where we have strength, but tire rapidly with repetition. My own example of arms -- I could hold something for maybe 20 seconds and then lost my strength to continue to hold it. Even things like chewing, typing and walking -- I could start out to do it normally, but quickly lost strength and had to pause maybe a minute or two o continue.
Each of us has different symptoms and weakness is different too in individuals. My own symptoms started with eyes, then whole head and then whole body. One "test" is taking a 60 mg pyridostigmine (Mestinon) pill and seeing if about 40 minutes after you take it for a few hours you feel stronger. That pretty much only works for MG. Some folks do have specific muscles affected, but many of us have most of the voluntary ones included.
Good Luck
Russ
Your symptoms are similar to some of mine. Ok, now for the long story, please bear with me ;-/..
My first symptoms were double vision in January 2017. I work on a computer all day and focus on detailed work 90% of the day. To start with, when I got home at night and sat down to relax in front of the TV, the TV screen began to double with one 'copy' of the screen slowly moving up and right. I would blink to refocus and after a few seconds it would double again until I was unable to watch TV at all. I could not do anything needing my eye muscles to focus, as it would quickly result in double vision. No reading, no TV, no computer work. Over the weeks the double vision was happening earlier and earlier, eventually starting in the late afternoon.
I saw an ophthalmologist in April 2017 and he referred me to a neurologist, with whom I had my first appointment in June 2017. I had a negative ACHr antibody test and a negative SFEMG.
Whilst waiting to have the SFEMG (I waited 4 months for an appointment) I began to have more symptoms. I started having problems with choking on fluids, again more often towards the end of the day. Liquids (including saliva) would go down my windpipe and would occasionally come out of my nose. I would cough so hard I could hardly breathe.
I was also having problems with my hands. Like you, dropping things, my hands, mainly my fingers just would not work properly. When washing dishes, after a few minutes, I couldn't hold onto the dishes properly, my hands felt incredibly clumsy and my fingers felt like they wouldn't work when trying to do anything needing any dexterity. I can only describe it as being as if my hands just got 'stupid'. My arms would feel like someone had strapped 5 pound weights onto them. They felt very heavy. Some nights, after the first few minutes I couldn't hold the hairdryer up to dry my hair without having to stop and rest after a minute of drying.
After the negative SFEMG test (in October 2017), the Neurologist suggested a trial of Mestinon. I started on 30mg 3x a day and went up to 60mg 3x a day. It was like I had got my life back for 2-3 hours at a time before the mestinon wore off. Based on my symptoms and my response to mestinon the neurologist gave me a 'probable' diagnosis of MG and is treating me for MG.
In the last few months I discovered a way to measure my hand weakness. The hand and finger weakness seems to be mainly with the small intrinsic muscles in my hands, the ones controlling adduction and abduction. These muscles help you grip. One night while trying to do a 'live long and prosper' hand sign (yes I am a star trek fan), something I have done easily many times, I just couldn't get my fingers to separate (abduct) more than 2 or 3 times. After trying this a few times my fingers would not separate at all. After resting my hands and trying again, they worked two or three times then nothing. In the morning, I can abduct my fingers many times, as I work through the day, the ability to abduct reduces until by the end of the day I am lucky if I can do 1. When I take mestinon, after about an hour I can again do this repeatedly just not as well as I can in the morning. Although, the more I do this the less I can do. I get some strength back but not to the level as I have at the beginning of the day. Adduction, squeezing my fingers together as hard as I can, is also weak. In the morning I can grip a piece of paper between my fingers, by the end of the day its as if there is no grip at all. The more I do this the weaker the muscles get until there is just no grip at all. The paper test is one of the neurology tests that can be done to test finger weakness. See this video - https://www.youtube.com/watch?v=is9qoHTcSQo
During the extremely cold days of winter (below freezing), my arms felt extremely heavy much earlier in the day and I could not grip a pen at all by the evening, the pen would just slide right through my fingers. I am waiting to see how the heat of summer will affect my strength.
Over the last two or three months the mestinon dosage has not been as effective and I have now increased my mestinon dose to 60mg 4x per day. I take it every 4 hours and do not take any overnight. I still drop things occasionally, most often in the late evening when I am tired and the mestinon has worn off completely. I have to make sure that when I pick things up that I consciously apply a little more force when gripping. I can't rely on my hands doing what they are supposed to do. I make sure that I take a mestinon before doing any grocery shopping, all that grasping items, putting things in and taking things out of the cart sometimes results in repeatedly dropping items, and, suffering the embarrassment of breaking glass jars.
I have also started experiencing some unsteadiness occasionally, it feels like I will fall over, mainly when I am doing something that is taking me a little off balance. I will stumble a little, again, this is something that I experience more towards the end of the day.
For now the current levels of mestinon that I take works for me. I really don't want to have to take any other medications and I am hoping that I won't have to - I am a little afraid of having to take prednisone.
I am just taking each day as it comes. If I get a new symptom, I write down what happens when I get it, when it happens and what I am doing at the time. If there is a new pattern I talk this through at my next neurology appointment.
I hope this helps, sorry it is so long.
Take care. J.