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...

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/ Myasthenia Gravis Support Group

myasthenic crisis

norcaldad
norcaldad
has any one else in this group gone into myasthenic crisis, if so are you now in remission? what symptoms if any creep in and out? how long has it been since your crisis, what is your quality of life at this current stage?
just curious, have been in remission for 7years, will always have mg, but have learned to live with it and won't let it affect my daily life,(except for daily medication). discussion groups like these are great especially for those of us who have this rare neurological condition, to read what symptoms and conditions we have is a great way to avoid a crisis, and better cope on a daily basis.
reillyp
reillyp
hey happyguy07 ... those posts contained nothing about breathing crises!! Please let me know more specificaly what knowledge or info u thought was helpful.
xmas25
xmas25
Oxygen is OK if you have the ability to breath,but if muscles too weak it won't help for long. I've never had crisis but read here in past some have bipap machine I believe at home which pushes the air/o2 abit into lungs. Like the rest of mg and many illnesses it isn't like take gallbladder out and you're OK no more belly pain. Mg is a chronic ever changing landscape. Take care
islandlady2016
islandlady2016
Thank you, my breathing is better now, so if I get like that again I'll know....now on mestinon 60 mg 2 4 x a day.
HappyGuy007
HappyGuy007
Tried to give some perspective on, 2 years of worsening symptoms issue... Nothing specific about breathing issues. I think it is wise to keep a C-PAP machine in the house for MGers, especially those with breathing problems... HG007
annkemp
annkemp
If anyone is having breathing problems I hope they are telling their neuro.
We ca n go down hill really fast.
You might need prednisone in addition to mestinon.
I entered er with breathing issues. Within a couple hours I could not move at all. I was on respirator for weeks. This is serious serious business.
I didn't want to do prednisone when docs recommended 20.
Crisis to me is when we go to hospital.
Anyway I ended up on 60 of prednisone
No picnic. Don't wait stuff out.....it didn't work for me at all.
annkemp
annkemp
Mestinon doesn't fix us. Your liesurly 2 mile walk is something I couldn't even consider.
Mestinon only helps get through daily routines. It isn't a fix sorry to say.
reillyp
reillyp
Added thanks to Rhanson ... for the breathing info! Both the Cpap machine info as well as the more detailed description of more exactly how we are troubled by breathing issues. Without such detailed advice, the topic has always been sounding pretty frightening to us newbies ... just these very briefly stated warnings to "get to ER!!!!!"" When the reality sounds more like our breathing difficulties can be managed and controlled like other symptoms and they come on gradually ... not like some truck hitting us and putting us in immediate, mortal danger. It sounds like the advice could be better stated as ... "whenever you START to feel breathing difficulties and your medication doesn't promptly diminish it .... get to ER .... "

Again, much continued thanks for those sharing their experience and great advice here. "
nnyguy1960
nnyguy1960
My Neurologist explained mestinon is like aspirin for a headache. Take it when you need it, but it doesn't solve the underlying problem.
tediii
tediii
Had a crises last March, 2015. Am now about 90% of baseline on 15mg Prednisone and 2500mg CellCept daily.