[Stellatum]

Hi, everyone. Last week I had five good days in a row, and I figured the Mestinon was finally doing its job. I thought I was being careful not to overdo it, but I certainly did more than I've been doing.

Yesterday was awful. Suddenly, everything was back. For a couple of hours in the evening I couldn't even walk. Last week I took the kids to a museum.

So, what's up with that? This is all new to me. Do you find that after a while you can figure out what causes good days and bad days? Or do they just come out of the blue for no apparent reason? My five good days were sunny spring days, and yesterday was pouring rain, so maybe that's it. Or maybe I did overdo it, and the effects piled up on me. Or maybe for some reason I got a surge of antibodies. I have no idea.

Would anyone who's more experienced with this disease than I am like to share what they've figured out? I mean, even if the triggers are different for every patient, do you figure them out after a while? Or at least some of them? I was so relieved to finally know what is going on with me, but now I'm confused again.

Thanks,
Abby

[jana]

Abby, I was diagnosed in 2005 -- had symptoms for at least 2 years prior to that -- so, I'm NO expert. Here is what I've learned:

My MG is worse when:
1. I don't get enough sleep
2. I am emotionally stressed/upset
3. I am sick/getting sick
4. I do not eat right or drink enough water or weak tea
5. it is NOT sunny
6. it is below 70° F
7. it is overcast
8. it is raining/snowing
9. a "fast" weather front is moving into our area
10. my allergies are acting up
11. I take medicines that don't "jive" with MG (such as -- almost any antibiotic for an infection)

There are probably OTHER triggers that I can't remember right now -- I'm in the middle of brain fog -- arrrrrgghhhhh.

I can't figure out if my body produces antibodies THAT quickly OR if they are just "laying in wait" -- and go ON attack whenever they feel threatened by one of the above mentioned changes.

[Shari_W]

Abby
Welcome to the wonderful world of MG. That is one of the most frustrating aspects of this disease.... the unpredictability of it. You will figure out what affects your MG as you learn to live with this disease. Yes, you will find out your MG triggers too. There will also be times when you really don't know what causes you to have a bad day. Doing too much can sometimes catch up to you when you least expect it to and when you don't even realize it.

Jana mentioned quite a few things that affect all of us MGers so I'm not really going to add to the list. Just try not to add additional stress to yourself by trying to figure out what you did to cause your bad day. Sometimes you just have them. What you should do is continue to take your medication, rest as much as possible and know that the bad day won't last forever. Your good day is right around the corner

Of course, if you start going downhill and not getting any better then you should contact your doctor.

I'll keep you in my thoughts and prayers,

Shari

[redtail]

Hi Abby

welcome to the wild topsey turvey world of MG. I've had 7 years of it. Now I can generally work out why I'm having a bad day. Jana has done a great job llisting what causes upsets, and most of those affect me. Hot weather also affects me, humid weather wipes me out. Now I just go with the flow, and think "ok, a bad day, tomorrow will be better." Its still hard to handle, but now I know I can.

[AnnieB3]

Abby, I'm sorry you aren't doing well. MG can be sort of confusing, to say the least.

When I go out and do errands, I am awful by the time I get home. Sometimes, I can barely move. You would think with rest that I would be better the next day. Wrong. The weakness from doing those errands may not "peak" until a couple days later. And then if I keep pushing things, I can continue to get worse.

I know that most people like things that are predictable. It makes life easier. I'd like to know that if I do A then B will happen. But with MG, it can be anywhere from B - Z!

For example, for the past three weeks, my neck/jaw/tongue muscles have been horrid. I socialized with family and those muscles got weaker. I don't usually do "nonstop" talking. Then I didn't rest those muscles enough, did more talking and it got to the point of my tongue cramping with the slightest talking, like a sentence. So I had to STOP TALKING. Like Jana and others, I can't do the drugs other than Mestinon unless absolutely necessary. I have to manage with balancing doing things with rest.

It's hard to get used to that balance. Give yourself some time. There just isn't some easy algorithm to MG. It's like having someone continually jump out from behind you and say "boo."

And I think one of the hardest things is thinking you will be able to be "normal" again. I honestly think very few people with MG get back there. If you can accept the new you, the new normal, things will go easier on you.


Annie

[Stellatum]

Thanks, everybody. I spent so long not knowing what was wrong with me, that now that I have a diagnosis (well, sort of), I felt like I was past the uncertainty stage. So now I expect everything to follow a nice neat charted system! You're right--I have to let go of that idea. OK, next step.

One of the most frustrating parts is having to take it easy when I feel good, knowing I'll pay later if I don't. Every once in a while, I decide the price is worth it, though, if you know what I mean. You start to feel like you're willing to accept the things that the disease takes away from you, but you're not willing to give it anything extra!

Nice to be here, where everyone understands. I hope you guys are all having a good day.

Abby

[cricket001]

It is like constantly pacing yourself...pace yourself especially when you have energy. I am struggling with this myself....I tend to always overdo it when I have the most energy....and pay for it later...It is my personal goal to learn the art of pacing!

[Pat 110]

Nicely said everyone...that just about sums it up!

Hugs,
Pat