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...
Hello, new here. My name is Cyndi and true to MG I’m 33 and was diagnosed before 40. I was diagnosed with MG after having speech problems that lead into drinking and swallowing problems. I ended up in the hospital a month later and a day after starting prednisone. Most symptoms have gotten better but I am still battling hard with fatigue and weakness.
I can’t find anyway stories or something that helps me understand others went through the same things. Will this fatigue and weakness get better with time and being on an immunosuppressant? I know some of my problems is I can’t do IVIG and only able to take the drugs.
Getting really discouraged I’m ever going to get back to “normal” as the doctors say. How can I possibly work if I’m always tired and in bed?!? Any and everything I do wears me out. Doctors appointments, grocery shopping or whatever. I’m tired and weak for days afterwards. Even taking a bath or shower is tiring!
Any help and or suggestions or even own journeys is much appreciated.
:-)
Sorry that you are having problems with fatigue.
At about 6 months of treatment, most of my MG symptoms were gone from prednisone at high levels and I was tapering down. I still felt tired, but found what worked for me was walking.
We lived in MN and it was winter, but as my wife was completing her cancer treatment with 6 weeks of daily radiation treatments that took about an hour, I started walking around the very large hospital/clinic. Having not been able to do that with MG, I was very pleased I could walk longer distances. I found that on the mornings I walked for at least a half hour (trying to do it briskly), I felt better for the whole day.
I think exercise does something to our body and brain to make us feel, not only less tired, but more ambitious. I know that MG sometimes makes this difficult, but I think we should try to do some. Walking, for me, worked. After the treatment visits with my wife were finished, and winter was still on, I pushed a shopping cart around big stores for exercise.
Good Luck
Russ
I am also new. I was diagnosed in May of 18 after suddenly getting sick in 2014. My MG started with extreme diaphragm weakness and fatigue I couldn't sit, stand, or walk for the first few months. Then I SLOWLY got stronger to where I could first sit up for longer periods of time which led to walking and standing for short spurts. It took me over a year to where I had a few hours to get things done like grocery shop, and then I would have to lay down the rest of the day .
I take mestinon and Cyclosporine which helps alot! I still need frequent breaks to rest but I can now be fairly active and am able to enjoy my life .
One thing I learned is that I feel so much better when I can sleep as long as I need in the mornings. If I wake up during a sleep cycle to an alarm, my symptoms are much worse that day.
I also learned from a PT ,who specializes in MG, to go slow with exercise. I was doing too much on good days and then crashing. She had me back up and start walking only 5 minutes and then stop. The next day I added a minute and so on. some days I didn't add time if I was symtomatic . I can now walk my dog or ride a bike consistently for 20 minutes.
Good luck to you! Cyndi
i have mg, since 2011 with 2 mayor relapses, due to excessive stress, and know in full remission since july 2018, had ivg for a year in the last relapse
but i know know that they are 3 major problem with the contro of mg,
1) stress
2) excertion from sports, work and different fisycal activities
3) standart of living, foods, drinks ect
also when you star getting week it would be a great idea to take a break and try to dose out 1/2 then you will fell refreshed
you should take walks, slow to brisk start 15minute and increase untill tou get to 25 minute a day, or twice if you can
as sports you can swim, do yoga, ride a bike, but without excertion
the key is to stop with all activities before it become a liability
and the most important fact is keeping in good talking realtions with your neuro, with extended conversation i n regard of your meds
best of luck (fighter)
i am 79 yrs old and i am able to walk 3.5 miles dayli without excertion, my stress and emotions are totaly controled,
after reading your post to cindy, i am relaying some info. that may help you with, your bones
3 months after i got mg. i had so much pain with mys skelatine, and since i am a slender person,all my stcture felt like it would crack at any minute. my neuro send me for a vit. d3.5 test it came back at less than 15ngs.
the standart at that time was minimum 30mgs. so my endo and neuro recomended to put me in a vit.d 3.5 program at hi doses, since i was and iam chronic defficient, the recomende dose is hi. (100.000 units every weeks. untill i reached a minimum of 65ngs, this is the best i have felt since my dicivery of mg,, not a single skelatine pain.
since you have osteoparesis, chek with your neuro and endo. to rest you for vit. d 3.5
as i say it may help you as it did to me. they have conducted tests for neorological problems as ares and dicovered that we are able to function more normal with that amount of doses. to bring the level to a standart higher than before
best of luck (fighter)
I still have a lot of fatigue where I’m barely getting out the bed to fix myself food throughout the day. I’m constantly sleepy and this really makes me wonder is this MG or something else.
I wish I did have the energy to do some sort of physical exercise! I definitely want to get rid of this prednisone weight!!!!
- Nan
I am sorry for you, that must be horrible. I have had MG for certainly three, probably ten years, (an initial myasthenic crisis most likely that was misdiagnosed as Guillain Barré)
Anyway, I wanted to share the description I use to share how it feels, I read it on a blog somewhere I can’t remember the source. I say moving is like being a turtle swimming in a pool of peanut butter.
Personally, but this is most likely not what you should do but it is what I did (not knowing I had MG but being told the fatigue was a complication of GB that was chronic and would never go away.) I can tell the difference being weak and being tired. If I am tired, I take a nap. If I am weak, I ignore it and do stuff anyway, just slower. Ten years ago, if I had waited for the fatigue to go away I would have never gone back to work or had a kid. Bear in mind, I am not recommending you do this. It’s just what I did when I didn’t know I had MG and it is a very hard habit to break so I still do.
Does the mestinin not help? I am so lucky, mestinon is wonderful for me.
I hope you get better soon!