I have read so much on this board and it has been a life saver in many ways., some of you are going thru so much., I guess my question is., as far as I know I started with the blurred vision , double vision August 2008., I have very little of the muscle weakness as of yet., My blood work confirmed the MG diagnosis., First was the mestonin., Neuro felt I was allergic and now the prednisone., so what happens from here., is there always a crisis eventually or is it just whenever the MG decides., what about the extreme weakness etc., etc., does this progress slowly or is it who knows., I guess I just feel in limbo and then when I hear what all of you are going thru., natually it is scary thinking when will this happen to me.
Again., Thanks everyone., you have all been so helpful to me.

Nancy, Here's the honest answer: It's different for everyone.

MG is not predictable. Even if you take really good care of yourself, your immune system can "flare" and make MG worse. Taking care of yourself and not "pushing" it does help though. Eating well, sleeping enough, living as stress-free as possible, getting infections taken care of right away, staying out of the heat, etc. are all ways to keep your immune system happier.

There have been times when I knew I was getting worse and rested more. Then there are times like lately when I'm not overdoing and my MG has decided to flare. In general, I do know how ticked off my MG will get depending upon what I do. And you only get to know that through experience with it. But, again, it can surprise you.

It's a day at a time deal with MG. I do the best I can and hope it will behave itself. That's really all you can do. If you get worse, check with your neuro or other appropriate docs like pulmonologists.

As far as a crisis being inevitable, without doing a poll of every MGer, that's hard to say. I've had one crisis, plus many exacerbations (where you get worse but not bad enough for the hospital). I would rather not have another crisis, so I do what I can to avoid one.

There's no magic bullet. Just take good care of yourself.

Annie

Hey there! Annie is right! THe only "predictable" thing about MG is how unpredictable it is.........lol!

Some MG'ers make it though needing only mestinon, while others need a whole ost of meds just to get off the sofa..the good thing is you are feeling pretty good and don't have a lot of muscle weakness

A crisis is truly awful! Having experienced one, I can honestly say it was the scariest thing that has ever happened to me, but I was so weak @ that point I wasn't even able to swallow.

Hang in there, hon! You are prolly one of the "lucky" ones with MG - if there is such a thing!

Big hugs!
ERin

Hi Nancy,

Erin and Annie are right - different for all, but I thought I'd share my experience with you. I first experienced double vision and ptosis but thought it was a childhood eye condition worsening so didn't go to the doctor. Eventually the weakness spread to other muscles but only after a lot of exertion (e.g I was helping my boyfriend's band lug their gear up 10 flights of stairs and my legs gave out and I fell back down those lovely stairs). After I had fallen for the 3rd time I went to the dr and she sent me to a neuro who immediately recognised MG. I've never had a crisis per se, but I did have an anaesthetic induced crisis after having my wisdom teeth out - so I guess I would say a crisis isn't inevitable as long as you are careful and don't over do it (and if you are having surgery check first to see if you are pseudocholinesterase deficient).

I was pretty stable with my MG for a couple years just taking 60 mg of Mestinon every 4-5 hours. I moved to Scotland in 2005 and soon after worsened quite a bit. At first my new dr thought it might be the stress of moving but my symptoms continued to worsen until I couldn't move around my house without help. I was able to continue working fulltime but had to make modifications (like taking the wheelchair entrance instead of the stairs). When my symptoms kept getting worse I was sent to a new neuro here and am now on pred (started at 60 mg daily now down to 40 mg alt days), azathiprine (150 mg daily), and mestinon (60mg every 3 hours). I've had a complete turn around (thank God) and am now just as strong as beofre i moved, maybe even stronger.

I'm still working full time and just got back from another trip with my school where we went to an adventure based camp. I was able to rock climb, abseil, hike all around and did almost everything pushing one of my kids in a wheelchair! To think that a year ago I couldn't reach up to wash my own hair was unbelievable! So, don't give up - MG is changable and it's unpredictability is annoying but just be ready for anything, Take the good days and relax on the bad ones. Make sure the people around you know about your condition so they understand if you need to hang on to their arm for support while walking or if you just need to take things a bit slower.

Good luck - i hope your MG stays right where it is and doesn't get worse but know we are here if it does.
~Kathy

Nancy,
I know it's kind of scary reading all about the rest of us and our experiences, but as everyone here has told you MG is different with different people.

My feeling is that, generally, those of us that join a forum to bounce ideas and get information are in non-controlled states or like yourself, newly diagnosed and looking for answers and help. I know of some Mger's that are and have been fully controlled or have never progressed to a point where they felt a need for a forum, so you're not hearing their stories.

I know a gentleman that has occular Mg, has had it for about 10 years now, had his thymectomy and eventually went into remission. The only problem he's had since was when he broke his arm, but even then the symptoms were light enough that he only needed his Mestinon to control it. He's a runner and got back to running the same amount he had prior to MG showing up on him.

So there's no predicting what path your MG will take, no guarantee that you will experience progression or, if you do at all, how severe it may be. I like to just take each good day as a blessing, and assume I will have many more good days!

If we live our lives in fear of the bad days, it kinda takes all the fun out of life! So even through a bad exacerbation I try to enjoy as much as I can (I still have the days when I "fall down" emotionally - it's only natural) and focus on the good things in life.
Spending time on "grieving" the good 'ol days does nothing but makes you bitter - it's best to have faith that they'll return again!

I hope you'll get to be one of those that gets all the answers you need to help you find your comfort level, hits a remission and stays there, and eventually doesn't feel a need for a forum like this - although we love having you here!

Lots of hugs.

Hi Nancy, Sooo, I'm going to pretty much echo what others have said.."echo"..lol I know of some who had No, nada symptoms, and then one day ended up in the ER with breathing issues, and straight into a crisis. She had nothing at all beforehand.
And then, I also know people, who have had little things here and there their whole life.
Myasthenia doesn't seem to really follow a pattern like diabetes would, or kidney disease does. It seems to have it's own mind when it's in an individuals immune system.
Our immune systems are all so different, so it affects them differently.
See, I'm just echoing what others are saying, but it's true.
Sorry I couldn't be of more help.
Love Lizzie