I'm sorry you had such a busy and difficult weekend. I would not wait for an appointment to request and increase in your mestinon. Call their office and let them know that it's working but it wears off very quickly. Ask them if you can increase it to at least times a day. Note: If the doctor agrees to do this you will need to increase it slowly to minimize the GI side effects that come with it. They should be able to give you instruction on how to titrate your dose.

I spend most weekends catching up on sleep and laying around. I'm useless on week nights and weekends. I always so that it's a good thing that I have an awesome view of Honolulu from my apartment because I don't make it out much. When I do make it out, I am not out long before I have to head back and rest. It's really sad but it is what it is. It's the "new me".

Helpful hints:
Two things to take with you everywhere you go.. a chair & mestinon

Plan for naps when you know that you have all day events. It may be necessary to leave an event, take a nap, and return later.

Use energy sparing strategies to minimize the tole that they take on your body. For instance if you would normally stand while putting on your make up... sit while doing it. When preparing a meal, but cut carrots in the bags instead of cutting your own. That's just a few things but I know others will chime in with their own tricks.

If you have an event that is going to take the entire weekend you have to plan it out so that it is least stressful for you physically and mentally. For most of us, we feel better first thing in the morning and worse in the evening. So try to get as much done in the morning as you can, then take a nap and get back to it. I usually don't stay out of the house any later than about 5pm to avoid suck fatigue and weakness that I can't make it home again.

There is nothing about MG that isn't overwhelming in my mind. It's all about accepting in and learning how to live with it.

I can't wait to hear the responses from others here. They are usually really good. Hugs to you.
Angie

If the Mestinon works for you, your neuro might give you more pills per day. Mine started me on one the first day, two after that and then I reported my journal to her (long drive to doc) and she said I could take three per day of 60mg.

Before the Mestinon I had a hard time doing laundry or grocery shopping for more than one item. Yesterday I cross-country skiied for an hour and today almost two. But the dosing of the drug and acitivity is important for me. I'm good for about 45 minutes to about 3.5 hrs. In the next two hours I'm at medium speed and by 6 hours, I'm back to my dizzy, weak self. Luckily the breathing problem never gets as bad as it was before.

Can you call your neuro and get permission to increase the dose before the visit so you can then discuss your ability to manage the side effects?
Flutebell.

I also would not wait for your next appointment. Many of us communicate with our neuros in between the face to face appointments as needed. Your weekend would certainly warrant a call.
As Directors of your church program you may have to enlist the help of others more than you did in the past. Good news is that being a large church you may have many takers.

Here is a link to a ditty from the MG links and news group.
http://www.dailystrength.org/groups/myasthenia-gravis-links-and-news/discussions/messages/14088982

I meant to add,
The article is called A Pocket Full of Nickels and explains the dilemma of rationing our energy.
Larissa ;)

The Biggest Trick I know is to not over do. I have found that I weigh everything I do: is it necessary? important? or do I need to just do it for the fun? How taxing will this be for me? I have had to make many adjustments and it has not been easy, so to say. There are short cuts on ways to do things. I have learned to take my handy seat with me almost everywhere I go. I don't know how I would get around in public without it. I almost always sit at the check out, if I am in a department store or at the dollar store. If I do make it to the groceries, you can find me sitting by the onions or the meat-whenever I need to sit, I sit. :0)

I am not a pity party person either, but sometimes, you just gotta party! :-( (I believe this is called venting and getting all the stress and anxiety out of your system)

I hope the best for you.

Barbel

I thank each of you for your replies and your tips.

To be honest, I guess I didn't realize or have not let myself realize that this is sorta a big deal. That it goes beyond just being a bit tired or exhausted. It does so make sense as to what I experience.
Mornings are best for me, if I have gotten adequate sleep - which typically is not an issue for me thanks to meds and an awesome husband. :)

One of the things I do is In-Home developmental therapy with children who have delays such as Autism. I work with them in the afternoons (after school) and I notice that getting up and down on the floor just takes so much more effort and I am wondering how long I am going to be able to do this. I am a fluffy girl - but getting up and down has never really been an issue until just the last 6 months or so.

I am an avid using of Essential Oils as well as a distributor for them. I am in the process of looking to see what I can add to my daily life in the area of oils to help with some of my symptoms. :)

Looks like I need to take an honest look at my life and realize that this MG thing is not just another label that I have - but a true re-routing of my journey.

Thanks to all of you again!!! :)

This is what happens in those first few weeks... MG is so hard for people to understand, even the name of the disease is difficult. But you need to be super careful of overexertion. Along with the pocketful of nickles, you have to remember that MG is a "snake in your pocket" -- it can be deadly if you are not careful.

But, especially, be careful when it is hot and humid. That is the worst! Those days you should just stay in. Also, if you get sick you now get sick twice as badly because the MG flairs up when your body fights infection.

Also, fun things weaken us just as fast as un-fun, stressful things. You may feel great but you will pay the next day. Sounds like your Marriage Ministry seminar was a lot of fun!

The hardest thing is to remember that we are not tired, we are weak! Everybody gets tired. But not everybody feels like their face is falling off, or their throat is closing shut. Or their arms feel like lead. Or their head is too heavy to hold up. Other people can't understand this, because we MGers remain so darn good-looking, even with our chronic disease.

If you want more mestinon, you should take it. It treats your MG symptoms, not the cause, and learning your perfect dose is part of the training. My Dr. initially had me on 2 60 mg of mestinon per day, and I tried to make it through the rest of the day by using the ice-pack trick (holding the ice pack on your eyelids helps them stay up). After a few days of walking around with a melting bag of ice in my tote bag I just thought, "screw it, I'll take more mestinon." Just tell your Dr. after the fact and get more mestinon.

Just don't take more than 60 mg every 4 hours and you should be fine, Make sure you have some food to accompany it, maybe just a granola bar or something, so be sure to have some of those handy wherever you go... Mestinon on an empty stomach is no fun! ~Joe

Yeah you need to talk to your Doctor My doc lets me take as needed I've been on it 7 years, You eventually get a feel for it. Take care.