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...
Saw this great webinar on MG and Coronavirus by experts posted by Myasthenia Gravis Foundation of America. It's lead by Dr. Kaminsky, a well-known expert.
Here also is a pdf of their current recommendations: https://myasthenia.org/Portals/0/MG%20COVID19%20guidelines%20FINAL%203_23_20_1.pdf
Very useful, thanks. This is the UK take
https://www.myaware.org/coronavirus-information
Nothing controversial I'm pleased to say.
Stay safe
Peter
I Also suffer from Myasthenia Gravis (MG or the snowflake disease ) I've gone into isolation as my job means I'm face to face with customers daily I have had nothing from my neurologist telling me to stay at home but I do understand it's a autoimmune diseases ,I also suffer from NF1 and had NET cancer 2x .
How are you both copping with this situation it difficult for everyone .
Take care of your self .
Can't speak for Speechie - sorry couldn't resist that one - obviously been waiting for an opportunity to say it!
Me, I've had MG for around twelve years and I am fully adjusted to life with it. Once the medication has been sorted out for us and perhaps more to the point works, life does become much easier to manage and truth be told when balanced against the riggers of getting older at the same time it's not at all bad. Most of us do well and cope well. Let's hope you have the same outcome.
Take care
Peter
I have sent both a friend request , can I ask if ever of you suffer with breathing problems I know it's not a crisis situation but getting very breathless even when I'm just sitting ,I don't want to bother the hospital as I know are very busy with the current situation .
But any advice would be great .
Take care both .
As with many things (MG) it depends on what you mean by that. Breathless, probably yes in the sense that I'm certainly neither as fit nor as active as I was ten/twenty years ago. Breathless (struggling for breath) no, not at all and therein probably lies the issue? If it is the latter then you, or whoever needs to go to A&E immediately. Not only that but is also very important that the ER team know that you have MG. As others have indicated on here there's a learning curve that we all go through as we get to know ourselves with MG. What works and what doesn't and from that we get to self-prescribe (within limits). Mestinon is a good example with most of us, I suspect, self-administering what they feel to be the right dose at any point in time.
The early days are really tough, or at least they can be and this can go on for upwards of 18 months.
Such a pity that your Neurologist doesn't encourage you to communicate whenever you feel the need - it certainly helped me.
Take care
PeterL