Questions
 

Looking up some things in the forum here has brought some questions to mind...(I am not officially diagnosed, waiting to get in to see neuro's with experience and expertise, ophthalmologist has said yes, mg, tho.)

Progesterone--Saw one that said progesterone makes mg worse. Trying to remember back to my daughter's pregnancy, which was the pregnancy from hell, and no one could figure out what was wrong. Very early in the pregnancy they had me using a hormone-supplement to make sure levels were enough to maintain the pregnancy. Would this have been progesterone? Had to use it for the first three months. It was a creme.

Caffeine--am I reading it right that caffeine will help alleviate symptoms a bit? Could this be why diet pepsi (pepsi one) seems to help me feel better, not just the waking up my foggy head, just all-over better and I'm feeling like drinking more and more of it?

Breathing--I get short of breath over everything and nothing. Especially getting worse when talking, especially if I am standing when talking, and walking when talking. Lately I am having to heave a big breathe between sentences and sometimes in the middle of sentences. This is just the way it has been for quite a while, tho getting worse lately. Saw the post about the breathing test--you breathe in, then count out loud as letting it out, right? I feel stress at 10-12 and mostly just make it to 14-18, which if I read it right, means I am in big trouble, but again, this is just the way I am and have been.

Can anyone tell me anything further on these questions? It will be June before I can get in to the neuro. Looking for as much info as I can figure out on my own until then, but eye problems have pretty much eliminated my ability to read, other than lightly skimming for info, or real reading of a few minutes at a time, then I get a migraine sometimes for the rest of the day from the strain, my eyes are misbehaving so badly. (I used to type for a living, so writing long-winded stuff like this is easy, reading it back, not so good anymore...)

Yes, that would have been a progesterone cream you were using to prevent miscarriage for the first three months of your pregnancy.

There is evidence that the ups and downs of the female hormonal cycle affect women with MG, but I've read conflicting things about which hormones make it worse. I personally think it's not the hormones themselves, but the shifts.

I get suddenly worse right at the end of each cycle, which is when the progesterone drops. I never had PMS, but my MG symptoms follow a PMS-like pattern. I once stupidly, with the help of a reckless ob/gyn, tried supplementing the progesterone with the idea of easing that drop. Made me really nauseous. I quit. Dropped from a higher level. Ended up in the hospital for a week because it made my MG symptoms so much worse.

The moral of this story is: be really, really careful with the hormones. And journal! Write down what you eat, what you do, what the weather is, what part of your cycle you're in, how you slept. If you can find out what makes you worse (or at least some of the things--most of us have the "for no reason" thing, too), you can avoid some triggers or at least know what to expect.

Abby

My daughter was noticing her MG symptoms were worse at the beginning of her period, so she asked the gynecologist to give her different birth control pills. He put her on a low dose BCP called Lybrel (one year without a period) and he agreed that this would probably be better for her symptoms.