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...
Hiya everyone. So a lot has happened over the last month or so with me, and I thought I would share. So I've been doing PT as most of you know, and it has been going really good. My upper legs are gaining a lot of strength again, and I've noticed a vast difference in the lack of falling. I still get weak, but for some odd reason I haven't been as weak as normal.
I also met a girl online, and she has been making me feel really happy, and I've noticed that on my happiest days, my MG doesn't seem nearly as bad. I wrote something about this before, but it still holds true. This weekend, I was awake for close to 18 hours, active for about 12 of those, and drove a total of 4 hours, with no real bad results.
Monday was a hard day, recovering, but I was still functional, not completely paralyzed like the last time I went out like this. So I'm really wondering, is something going on in my body, or is this in my head? I remember someone saying that it is possible for MG to burnout, and I'm nearing the 10 year mark, and wonder if this could be a possibility as to why I'm feeling a bit stronger then what I consider normal.
I saw a neuro earlier this month and did my blood work, and that came back negative like I expected. I got an appointment in December to see him again and to do the next thing, which I assume is an EMG. He says I have abnormal MG qualities and wants to re-diagnose me. That in itself made me wonder what is going on, as 90% of my symptoms are textbook MG.
I'm so happy to be feeling better, and honestly want it to stay this way, but I wonder if this heightened sense of feeling well is just a phase and it is going to fade, or if something else is at play that I'm unaware of. Thanks for any input you give to help, and as always, thanks for the support. You guys are wonderful.
I also met a girl online, and she has been making me feel really happy, and I've noticed that on my happiest days, my MG doesn't seem nearly as bad. I wrote something about this before, but it still holds true. This weekend, I was awake for close to 18 hours, active for about 12 of those, and drove a total of 4 hours, with no real bad results.
Monday was a hard day, recovering, but I was still functional, not completely paralyzed like the last time I went out like this. So I'm really wondering, is something going on in my body, or is this in my head? I remember someone saying that it is possible for MG to burnout, and I'm nearing the 10 year mark, and wonder if this could be a possibility as to why I'm feeling a bit stronger then what I consider normal.
I saw a neuro earlier this month and did my blood work, and that came back negative like I expected. I got an appointment in December to see him again and to do the next thing, which I assume is an EMG. He says I have abnormal MG qualities and wants to re-diagnose me. That in itself made me wonder what is going on, as 90% of my symptoms are textbook MG.
I'm so happy to be feeling better, and honestly want it to stay this way, but I wonder if this heightened sense of feeling well is just a phase and it is going to fade, or if something else is at play that I'm unaware of. Thanks for any input you give to help, and as always, thanks for the support. You guys are wonderful.
I've never heard of the MG burnout, but lots of MG cases go into remission all by themselves. I would love to know what those people are doing! ~joe
Ann
For the last 5 or so years, I've been at the same level. No real changes, variables on the day, but overall I didn't peak nearly as high as I do now. As strange as it sounds, I have a system, a way to make sure I keep myself in check, so that I don't overdo it. Lack of medicine has mostly been the reason why, but for me, it works.
I've noticed in the last 2 months a definite increase in my overall strength over said period of time, then in any time over the last 5 years. I almost feel a bit crazy having such a system, but I suppose whatever works is a good thing.
I want it to continue, more then anything else, thus me trying to figure out what might be going on. I feel like my Dr doesn't have enough interest in me yet, and with the very long appointment times, it seems hard to get any solid answers. I am considering finding a new doctor to talk to about this.
For the last 5 or so years, I've been at the same level. No real changes, variables on the day, but overall I didn't peak nearly as high as I do now. As strange as it sounds, I have a system, a way to make sure I keep myself in check, so that I don't overdo it. Lack of medicine has mostly been the reason why, but for me, it works.
I've noticed in the last 2 months a definite increase in my overall strength over said period of time, then in any time over the last 5 years. I almost feel a bit crazy having such a system, but I suppose whatever works is a good thing.
I want it to continue, more then anything else, thus me trying to figure out what might be going on. I feel like my Dr doesn't have enough interest in me yet, and with the very long appointment times, it seems hard to get any solid answers. I am considering finding a new doctor to talk to about this.
I always compare this to a head on collision of two cars. You don't see the energy, you see the twisted metal caused by the energy force when they collide.
I'm a big believer in good emotional management as well as mind power, in overcoming MG (or any illness for that matter).
I say emotional mgmt, coz trying to be happy all the time is not normal. And any abnormal behaviour only adds to the imbalances in the body. Acknowledge bad emotions such as anger, fear as the red flags they are to something that is wrong in your life. Deal with that problem in your life that causes that bad emotion. Don;'t ignore it. At same time, try to have positive outlook, and faith that things will be better.
Mind power is about having good thoughts or thoughts that empower you, definitely helps.
There is a mind over matter factor here. I've mentioned this before in my previous posts about alternative therapies.
Autoimmune diseases are known to affect people who have emotional blockages or psychological blockages, or who have suffered some kind of emotional trauma. Somehow this causes our bodies to turn on itself.
But you have expereinced the benefits of positive emotions on your MG. so it speaks for itself.
Happiness enhances immune system, balancing it out. Something MG needs.
Here's to your happiness, and good health.