Hi Abby,

This is a wrong way of looking at MG.

Many autoimmune diseases tend to fluctuate in severity, and if you add to that the fact that muscle strength and endurance can be effected by numerous other factors, you can easily see why the symptoms change in their severity over the course of time.

Not every improvement is long-lasting remission and not every worsening is a relapse. MG decreases your reserves and therefore your ability to easily adjust to what for others may be minor and hardly noticed changes in the environment.

The best way to assess MG severity (and this too has its limitations) is probably by using the MG composite score.

http://www.ncbi.nlm.nih.gov/pubmed/20439845

http://www.aan.com/news/?event=read&article_id=8885

Many times a few days of rest, can lead to significant improvement, without the need to make any changes in medications. (just like a few days of over-doing it can do the opposite).

Hope you feel better soon.

Alice

Hi, Mike,

It's not you which is refractory, but your disease!

I was just talking about how much better I was on Friday.
Then on Saturday, my right leg gave out and I fell. In the chicken house. Not a pretty sight. At least my landing was padded......... Then my vision was blurry that evening. My ptosis was terrible by bedtime.
I was thinking that I spoke too loud and the "Fates" overheard me.
I feel frustrated. I guess I am saying all this to say that I know how you are feeling.

Hi Abby,

Sorry to hear you're not doing well! Wanted to throw my two cents in about prednisone, as you mentioned you're not on it.

As you've probably read before, I'm 38, seronegative, type 2B-ish MG. I am on mestinon 30 mg 4x/day, prednisone 25/day, and imuran 100/day. I wouldn't say I'm up to my old normal, but I can say that I need all three of these medicines. I have hit a good balance that keeps me at work, and the fluctuations between on the couch and being out and about are fewer and not as severe. I have tried to wean off the prednisone, got down to 15, but now know that I need it. I also need the mestinon, as I can feel it wearing off about ever 3.5 hours. The imuran I just started 3 months ago, but I do feel it is also contributing.

I hate that prednisone is not very nice to the body, but it's a love/hate relationship because I'd be on the couch a lot more without it. The change I felt was quick and worth the negative effects in my case.

Best wishes to you!!
Susan