Today I feel like I have Plain Old MG. Yesterday, I got up early and took my kids to a special Mass in a city I'm not familiar with. Then we stayed for the reception, where I was having such a good talk with a friend that I didn't want to interrupt it to tell her I had to sit down. Then we got home and I baked and decorated a fancy cake for my daughter's birthday. Then we went to a friend's house for dinner. Usually, I would only do one of those things on any given day, and not all three. By 10:00 I was in a state of utter, utter exhaustion, and had to be helped upstairs.

This morning my first try at sitting up in bed failed. My arms are tiring quickly as I type this, and while I don't have double vision, it's a strain to keep my eyes focused (hello, Mary Walker phenomenon). I hope that next time I start questioning whether activity is a trigger for my weakness, I'll remember writing this.

Meanwhile, my daughter's birthday dinner menu has changed from home-made cheddar-broccoli soup and rolls to take-out Chinese, I'm playing hooky from church, and I've decided to wait until the laundry reaches critical mass, thereby obliterating itself in a nuclear explosion before I have to deal with it. I hope that the rest of you can find a way to rest, too! And thank you so much for talking this through with me. Not only do I get excellent information and leads, but it helps me to sort out my own ideas.

Abby

So whatcha think is causing the weakness? (ducking!) I don't know if you are in a love or hate phase with the mestinon right now, but if you haven't already tried it, you might try 30 mg or so....just for an experiment.

Take care--and know I wouldn't tease if I didn't care (and understand!)

Once we had a family staying in our house (we have an in-law apartment). The whole house is heated by a central wood stove. The husband always thought I was managing the stove wrong--the different vents, etc. He wanted me to do it in a way I knew for sure wouldn't work.

So, after weeks and weeks of this discussion, both of us getting more and more frustrated, my family went away for a few days, and we left him in charge of the stove. Finally, he could do it his way! When we got back, he told us that the house had been FREEZING the whole time we were gone, because he just couldn't get the fire to burn properly. But he had an explanation: atmospheric pressure.

So, in answer to your question of what is causing my weakness today, I would say: definitely atmospheric pressure.

I have tried this experiment SO many times...I've tried it to abort episodes, and to prevent them, and to improve constant weakness and to prevent it. I've tried it for each different kind of weakness. Really, no dice.

...and I probably wouldn't take it so well if I didn't know, in my heart of hearts, how very right you are...And yet--I was so energized by my two social visits yesterday! As I know you understand, sometimes we need emotional energy even more than we need physical energy--though I always hasten to add that I have the luxury of making such choices because I never have breathing trouble.

Take care,

Abby

Abby, love your analogy

kathie

Hope the birthday party goes well! And yes, sometimes (usually) it is way more important to get out and enjoy yourself. If you'll notice, it's a crapshoot whether or not it will affect you later. I remember reading posts about how you've been a busy bee for weeks on end with no repercussions at all. Such is the nature of MG. If we could plan the weak periods, it would be so much easier!

Yes, I had a great summer--I took the kids to the ocean many times! Long drive, hot sun, long walk--and I was fine. Go figure. I started getting symptoms back in mid-August.

But today's weakness was well timed, because it came just as I was doubting whether my weak spells were really related to activity or not.

I'm not sure what I'm going to say to the doctor tomorrow!

Abby

Abby, I love your story.
I just had a similar experience with someone who thought I did everything wrong and he is now going to fix it. Well...Hopefully he will be able to mend things back to where they were before...

I fully agree with that. You can do that even if you are having breathing troubles, as long as you have a good respirator at hand.

There is a joke I like to tell my patients: A 60 year old healthy man comes to his physician and tells him that he wants to live to be 100 and wants his advise on how to achieve that.
The doctor asks him: Do you drink wine? the man says-of course not.
Do you go out? and the man replies-Of course not. Do you indulge on delicious whipped cream cakes every now and then? and the man again replies-of course not.
In that case, the doctor asks, why exactly do you want to live to be 100?

It took me 6 years (and a wonderful neurologist) to gradually stop feeling that "Alice in wonderland" loss of control over my life. Paradoxically, what helped me most was accepting the fact that I have no control over this illness.

It may seem funny, but understanding that what ever I do, I can't change the course of this illness gave me the peace of mind required to deal with my daily life with it. I realized that all the temporary aids I used (until I get better) actually enable me to lead a reasonably productive life.

But, this did not happen in one day, one month or even one year.

Hi Abby,

I just wanted to start off by saying I have no idea what's going on or what's appropriate in your case and this is not to be considered advice. But because you never know who's lurking and following and learning, I wanted to point out that weakness on waking after overdoing it the day before is very consistent with HKPP.

I smiled a little because you usually say that your normally stronger mornings would be atypical of HKPP, yet here you have a day with morning weakness and based on that, conclude that it's straight MG. It can be complicated; there are 3 people on the HKPP forum who are believed to have both periodic paralysis and some form of myasthenia. A fourth was originally misdiagnosed with MG, now has genetic confirmation of HKPP, but had had a positive response to Mestinon that was measurable on EMG readings. (I know you're not helped by Mestinon, I'm just pointing out how muddy the waters can get.)

Exercise can definitely be a trigger for channelopathies as well as MG. Here's an article you might find interesting. http://www.sciencedaily.com/releases...0117111844.htm

When I see the doctor in Boston, I want to ask him about HKPP. If he doesn't know anything about it, maybe he can refer me to someone who does. Thanks.

Abby

I've been trying a diet designed to reduce HypoKPP symptoms: that means not letting myself get too hungry, and not eating a lot of carbs and salt in one meal. So I eat small meals at 8:00, 11:00, 2:00 and 5:00, and I eat a low-salt, low-carb supper. I am trying to see if I can head off that attack of weakness that typically hits me between 5:00 and 6:00.

It's too early to know for sure if this is a new pattern, but it seems to me that when I do this, I get an attack at around 7:00 instead of around 5:00. Not sure what to think of that. Probably a coincidence. But I think my eating plan is sensible enough, and harmless, so I'm going to stick with it some more.

Abby