[Stellatum]

I had a really bad couple of months, mid-December through mid-February. I don't know why. Now for the last two or three weeks I've been steadily improving. I keep thinking it can't possibly be 4:30, because I'm not only still on my feet, but feeling strong. I think the clock must be wrong. But nope.

In January I couldn't get to the end of the street (500 ft.) and back. Now I walk around two blocks every evening. I was having daily collapse spells all that time, and I haven't had one now for a couple of weeks.

So, what made me better? I can't think of anything I'm doing differently. I have identified some triggers that give me bad days (too much activity the day before, female hormones) but not triggers that give me bad months. And I really cannot figure out what has given me this good spell.

Who has a clue for me? What can trigger a whole bad month? And what sorts of good triggers are there? Who would like to plumb these mysteries with me?

Abby

[Geode]

Should we assume you haven't started your "ingredientarian" lifestyle yet? If you had just made a change, I'm sure you would have associated your improvement with it.....

Is the temperature warming up where you live, to coincide with the improvement? Did you overdo it at Christmas and you're just now getting back to normal?

[Stellatum]

Originally Posted by Geode

Should we assume you haven't started your "ingredientarian" lifestyle yet? If you had just made a change, I'm sure you would have associated your improvement with it.....

Ha! Nope, it's going to take me at least two months to psych myself up to ingredientarianism! Plus, I need my daughter home from college for moral support, and help with the cooking.

I just asked my husband, and he reminded me (I'm pretty thick) that both my neurologists told me that the larger dose of Imuran I started taking last fall could start kicking in...about now. I hadn't taken that very seriously because I got a big boost one month after I started taking that larger dose. The boost lasted a few weeks, and then I went down again. So I figured that I had already seen any improvement the drug would make.

It's so hard to tell if these ups and downs are related to the drug, or just the way MG behaves sometimes.

Abby

[Stellatum]

Originally Posted by Geode

Is the temperature warming up where you live, to coincide with the improvement? Did you overdo it at Christmas and you're just now getting back to normal?

Thanks, actually that's a thought. My house was very cold this winter. By "very cold" I mean that on many days, I could see my breath everywhere but right next to the wood stove. And it has been warmer. Hmm. Thanks. I have never found a day-to-day correlation between temperature and weakness (either hot or cold), but maybe it contributes to week-to-week weakness.

Abby

Hi Abby,

This is very familiar: this happens to me twice a year, always takes 2 months (give or take a few days).
Did you get a flu shot?
I always have one, but it also triggers my immune system like crazy (which is not so weird, considering there's stuff in there to do that, so you can make that flu shot useful). 2 weeks after my flu shot, MG is much worse, my RA is flaring up like crazy and my thyroid gets attacked.

Or did you maybe have a virus or something?

I also have this worsening of the MG, without any obviouw cause. After a while it will get better. I stopped looking for the cause, because I can't figure it out, and just think it's part of the disease.

Good luck, and good news you're feeling better!

[southblues]

I would not change my diet, change my lifestyle, or anything if I were suddenly feeling better. I am very glad that you are doing well.

[AnnieB3]

Just don't keep wearing the same socks MG game after MG game, like some baseball players do. Good one, Celeste.

Abby, Change can be hard to ascertain when it comes on slowly. Maybe you've been gradually getting better but didn't notice it right away. I have no idea why you're better but I'm glad you are.

Annie

[Tracy9]

Abby, if we could solve this mystery, it would make my life a heck of a lot easier.

After my last crisis two months ago, I wrote down every single warning sign I had been having to be aware. I somehow thought I was giving myself "THE KEY" to unlock the mystery of how to head off a crisis or something. Since then, when I've had a few warning signs, I have realized that they don't mean I'm going into crisis. I have this list and really, it's kind of useless, because they come and go, and it really all comes down to whether I can breathe or not.

I spent every one of my 9 days in the hospital trying to figure out what I did wrong. The day before, I'd felt unusually great after being down for the count for the two weeks after Christmas. Then, BAM. The doctors kept reassuring me there wasn't any clear reason; I'd missed a week of IVIG before; I'd had a ton of stress before, and I'd sure as heck overdone before and NOT gone into crisis.

I can be horrible one day and suddenly wake up great the next. I've started to feel like MG is just one big ugly surprise party.

I really hope it's the Immuran doing this! I feel as if there is often no visible rhyme or reason to any of this. I WISH THERE WERE! I have pushed myself to the point recently where I thought I'd end up in the ER and woken up the next day ready to go again. After Christmas, I stayed in bed resting for two straight weeks and still went into crisis.

I hate the unpredictability. When I have good days, I never know how long the tease is going to last.

But there are factors we can sometimes pinpoint, and right now I'm saying a prayer that you increased Immuran is kicking in, and it's going to stay fantastic for you!!!

[Stellatum]

Thank you, Tracy! I'm still "up." I haven't been down (as in literally lying on the floor!) for about a month now. And I can't figure it out. We have a TON of stress here (I have a boatload of mostly-grown children with big-kid problems). I've been working as hard as usual. I guess the Imuran is the only conjecture that makes any sense. But if that's it, I'm not expecting this to last, because I got an Imuran boost before, upon having the dose raised, and it lasted three months and then I sank back down. But thank you for your reassurance, your prayer, and your good wishes.

Abby

Originally Posted by Tracy9

Abby, if we could solve this mystery, it would make my life a heck of a lot easier.

After my last crisis two months ago, I wrote down every single warning sign I had been having to be aware. I somehow thought I was giving myself "THE KEY" to unlock the mystery of how to head off a crisis or something. Since then, when I've had a few warning signs, I have realized that they don't mean I'm going into crisis. I have this list and really, it's kind of useless, because they come and go, and it really all comes down to whether I can breathe or not.

I spent every one of my 9 days in the hospital trying to figure out what I did wrong. The day before, I'd felt unusually great after being down for the count for the two weeks after Christmas. Then, BAM. The doctors kept reassuring me there wasn't any clear reason; I'd missed a week of IVIG before; I'd had a ton of stress before, and I'd sure as heck overdone before and NOT gone into crisis.

I can be horrible one day and suddenly wake up great the next. I've started to feel like MG is just one big ugly surprise party.

I really hope it's the Immuran doing this! I feel as if there is often no visible rhyme or reason to any of this. I WISH THERE WERE! I have pushed myself to the point recently where I thought I'd end up in the ER and woken up the next day ready to go again. After Christmas, I stayed in bed resting for two straight weeks and still went into crisis.

I hate the unpredictability. When I have good days, I never know how long the tease is going to last.

But there are factors we can sometimes pinpoint, and right now I'm saying a prayer that you increased Immuran is kicking in, and it's going to stay fantastic for you!!!

[Maiden8680]

I've been having some pretty rough months myself, since Dec 31st to be exact, it started with my back (not exactly MG related but I'm sure the MG didn't help), and I have been having MG and hypoglycemia days often... in between I had to fight a cold, stupid job, and hormones. Plus it's been pretty cold here, and any low pressure system that comes through the area drives me nuts, so I kinda blame it on that as well. I don't know where you are living, but I'm in the North East and we've been having some crazy weather since October! I'm hoping once the warmer weather kicks in, I'll find my happy medium until it becomes wickedly hot again and brings me to the other extreme lol.

I've also had a few days in a row when our house was very cold, we could see our breathe and that did NOT help.