View Single Post
Old 01-28-2015, 08:26 PM
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
Smile

Hey, ArtandIron. That's good that you have a diagnosis!

If my arms are weak, and I lean on a desk, for example, with both of them, my arms will have a "tremor." And, yes, that is from weakness! It happens when muscles aren't holding a contraction well.

Mestinon kicks in after about a half an hour after you take it. It wears off about 2-1/2 hours after you take it. So you get about two good hours of use (not to contradict you, Mike!).

It would be a good idea to write down the dose amount and when you took it. If you don't have any side effects, there's no point in writing those down.

I have kept a journal of times/doses ever since I began taking Mestinon (2001), because I don't want to forget when I took a dose and take one too soon. It's happened, even when I write them down!

I used to lift weights, too (or at least attempted it a lot due to having MG since about birth). And, yeah, power lifting is out. Or at least until you can stabilize MG. Mestinon alone won't do that, because it doesn't suppress the immune system that's making those antibodies that are attacking your neuromuscular junction.

You can still exercise, but I would wait until you know how you're doing. The fact that your muscles are shaking during just a neuro exam tells me that your MG is not good right now. You can have as much benefit from something more "fluid" like a Total Gym or even thera-bands. And keeping the reps down or spacing them out is good. Having a fan blowing on you while you exercise is a very good idea, so you won't be heated up. Swimming is a good exercise for MGers, if the water isn't too warm.

Also, investing in an oximeter is a good idea, too, so that you can see what your pulse and O2 do during and after exercise. You can always get a referral to a PT who knows about MG so that you can discuss any other options.

For someone who loves to weight lift, that might one of the hardest adjustments for you. A new way of doing things isn't bad, just different. You might have to dial back your expectations from now on.

Hey, Mike, are you sure you don't have an electrolyte imbalance, carpal tunnel, or a vitamin issue (due to the hand tremors)?

This sounds like something a grandparent might say, but don't stand when you can sit! Using those disability carts in stores, sitting while doing activities, etc. will save your muscles for what you really want to do. That way, you can conserve on energy. And don't be shy about taking naps or sleeping longer. That helps, too.

I really hope you can do well with MG. Keep asking questions!!

Annie
Attached Files
File Type: pdf Mestinon_Suspension_60mg-Tablet_60-180mg_PI_May01.pdf (38.7 KB, 53 views)
AnnieB3 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
juliejayne (01-29-2015)