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

You probably are way overdoing. If you can lay down and rest in the middle of the day, it can help. A trip like that will probably wear you out for a week afterwards. One thing that might help is to use a wheelchair for part of the day just so you don't wear yourself out.

I agree with Celeste. I have found that I may be able to do what I want for short time, but then I pay the price. I am flattened for the next few weeks. I'm going through that now also. I have been having problems with my back and have been seeing a physical therapist for about 3 weeks. He has been teaching me strengthening and stretching exercises and I was so thrilled that I could do them and help myself, I overdid them. Now I can barely get out of bed and am having difficulty walking. I knew better, but did it anyway! It may take several weeks of rest before you get your strength back to anything close to what it was before you went to Disney. You can call your neuro and see if you can increase your mestinon (depending on if you have any side affects). Maybe take it in larger doses or closer together.

Sorry you are feeling bad but hope the trip was worth it and you built some wonderful memories!

When I overdo it, it can take 1-2 weeks to recupperate. I took a day trip to the shore this year and ended up in bed for 2 days. It's like an MG activity hangover. Keep resting as much as you can, stay cool and try not to stress about it.

hope you feel better soon,
kathie

Hi Eve,
I agree with all the other comments...but if you know in advance that you will have extra physical activities, you can shorten the time interval between two doses of Mestinon. You said you were on a 4 hour 60 mg schedule, you can switch to every 3 hours or even 2.5 hours. In your case, I would have taken 60 mg every 3 hours the first 2 days and 60 mg every 2.5 hrs the last days if necessary.
Do it by steps and when the physical activities are over, revert progressively to your original scheme.
I hope a good rest will make you feel fine!
Maurice.

Thank you all for your replies and you advice - its reassuring to know that you have all experienced similar problems and its not the end of the mestinon magic!! lol!! I will definitely keep all of your advice in mind....thanks again for taking the time to reply!!

Evex