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...
Hi everyone! I hope you are all ok, sorry, I know I've been quiet lately, I have been doing quite well on Mestinon and had found a pretty good balance....okay, I wasn't back to pre-MG but I was doing pretty okay and managing to take my girls to see Christmas lights etc...which was lovely!
However....we booked a 4 day trip to Disney before my MG resurfaced earlier this year and I had been very apprehensive about how I would manage and it seems I was right to be worried. I did pretty well the first and second day and had a lovely time with my little girls doing better than expected given the walking etc BUT the third day hit me like a train! Mestinon was only kicking in for 2 hours max and my crutches had to come out as my legs got weaker and weaker, I began to feel really queasy/sick, lost my appetite and just felt giddy and drained -which I have felt when I've over done things before, except this was constant not just later in the day as it had been before?? The day we came home I felt very weak and queasy, my mestinon kicked in better for some doses than others and I was just relieved to make it home!! That was Sunday and I have done nothing but rest and sleep since - the queasiness is settling a little although it is still there BUT my main worry is that my mestinon is still not working as it did :( Some doses kick in for an hour or so (I usually get around 4 hours from 60mg which I take 4 times a day) and some doses hardly at all!! I thought I would be improving with the rest but it doesn't seem to be the case....am I expecting too much? Do I just need to be patient and take more time off work to rest or should I be concerned that mestinon isn't working??
I would be so grateful for any help or advice as I don't want to take the long trip to my Neuro just to be told I need to rest more??
Eve.x
However....we booked a 4 day trip to Disney before my MG resurfaced earlier this year and I had been very apprehensive about how I would manage and it seems I was right to be worried. I did pretty well the first and second day and had a lovely time with my little girls doing better than expected given the walking etc BUT the third day hit me like a train! Mestinon was only kicking in for 2 hours max and my crutches had to come out as my legs got weaker and weaker, I began to feel really queasy/sick, lost my appetite and just felt giddy and drained -which I have felt when I've over done things before, except this was constant not just later in the day as it had been before?? The day we came home I felt very weak and queasy, my mestinon kicked in better for some doses than others and I was just relieved to make it home!! That was Sunday and I have done nothing but rest and sleep since - the queasiness is settling a little although it is still there BUT my main worry is that my mestinon is still not working as it did :( Some doses kick in for an hour or so (I usually get around 4 hours from 60mg which I take 4 times a day) and some doses hardly at all!! I thought I would be improving with the rest but it doesn't seem to be the case....am I expecting too much? Do I just need to be patient and take more time off work to rest or should I be concerned that mestinon isn't working??
I would be so grateful for any help or advice as I don't want to take the long trip to my Neuro just to be told I need to rest more??
Eve.x
Mestinon cannot work if the receptors are all gummed up with antibodies. When you overdo it like that, it will take a while for recovery. You may be at the point where you need to suppress the antibody production, not just bypass the misbehavior, but rest will help.
It is a good idea to check in with your neuro when you have a marked change in your condition, although when there is good explanation and your breathing is not affected, it may not require an office visit.
Glad you had those two good days and sorry you got blasted for them. Take care, b.
Neuro has changed my meds 4 times already.
One thing I find is that I MUST avoid stress, even good stress.
I MUST take power-naps (helps manage stress)
I MUST get restful and deep sleep at night (meds help, like ativan or a little pot butter).
The times when I've had great, nearly symptomless days are when I followed those rules.
The times when I've had problems all day are when I broke one or more of them.
Positive Attitude (which relieves stress) is a miracle drug. I met a guy at work, also in his 60's, who's DAD is 86 yrs old, with MG for 24 years, living a pretty decent life. THAT gave me courage, which reduced stress, which seemed to reduce my own symptoms. After meeting this co-worker and learning about his dad, I had the two BEST days I've had since being diagnosed. Actually working up a physical sweat cleaning out my garage and doing yardwork 2 days in a row.
Hope that helps.
Unsure 81....yea I know when I am doing too much when I start poppin mestinon like candy.
3 days on the couch will most likely cure you. I mean on the couch....not up and down and up and down. Haha
Ya know what I mean.
regularity for me. I'm happy to hear you had some fun times and got to make memories with your family. Rest and don't push yourself now.
Just let your body refuel. :)
Blessings,
Carly
Eve.x