Hi Dottie,

I'm sorry you're in the position of having to join the forums, but glad to have you here!

I was dx with generalised MG in 2004 but have had it at least since 1996.
I also do not have the droopy eye, but I also have another as yet undx'd condition causing other symptoms. Prepare yourself for neuro's questioning the dx of MG without the droopy eye!

I have one big concern from your post. The 180 timespan was designed to give some coverage overnight. The time release action is too sporadic for it to be the formula of choice. I really feel you should call your doc and see about getting a Rx for the regular Pyridostigmine. I have Timespan now and have had it with my last flare as well - both times being cautioned by my neuros (2 different ones) that it is ONLY for night time use.

With the regular Rx and proper dose for you, you should be able to feel a difference within one dose. I get dramatic relief from 60 mg within 20 minutes when I am very weak or having breathing difficulty. At times I have to take 60mg every 2.5 to 3 hrs., other times I can go 6 hrs before another dose. The symptoms & severity can wax & wane from hour to hour and day to day, so it's a constant monitoring thing with MG.

I have a little test I give myself when I'm not sure which condition is causing problems. If I can't stand up from a chair without using my hands to push me up, I know it's my MG. 20 minutes or so after taking the Mestinon, I can. I do this if it hasn't been very long since the last dose. My legs are heavily affected with my MG so this test works for me. You may need a different "test" depending on which muscles are worst for you. One person had posted once that he lies on the floor and tries to lift a leg from that position.

Taking too much can cause cholinegeric crises - the same symptoms as not enough- so most newbies aren't given the option I have of self dosing. You have to get more familiar with YOUR signs and symptoms before that is safe.

The best advise I can give you is to make sure you have a good neuro that stays current with MG - they all have sub specialties so some are more interested in other afflictions and you may not get the best, most up to date information and care from someone more interested in a different area (vascular neurology, for instance). That, and the most important piece of your plan is management of your activities.

When I read literature that said myasthenics can lead nearly normal lives, I was considering my old normal - up at 4:30, do aerobics, a load of laundry, get ready for work, work 10-12 hours, go home and make dinner, clean the kitchen....So I figured up at 6:00, skip the aerobics, work 8 hrs, let hubby make dinner while I cleaned up, etc. - WRONG. A normal life means not in the hospital or wheel chair, but NOT that you will be able to carry on as you did before. Until you are "under control" you'll have to make SERIOUS moderations to your routine, planning to do your necessary activities while your meds are at their peak. Once under control, you can get back to a more "normal" routine, always keeping in mind that there is a cummulative effect - you may be able to pull off doing a lot one day or for a week, but it will affect you later.

Best of luck with finalizing your dx, making sure you have the best neuro for your situation, and finding the best treatment plan. Just be really careful for now! You'll find lots of good information and support at this site - we have some amazing people here!

We're all in this together!