Quick question
 

In the beginning does/can MG present as a daily thing for several days and then go away for several days only to return again?

Early on in the disease and even now two years later I have "good" and "bad" days that are often days apart. The good news is, at least for me, is that the bad days are less frequent now that I have the medication dosing correct, and have the experience to know when to modify Mestinon dosage to deal with the changes in symptoms.

thanks
 

And do you take the mestinon on the good days or is it prn?

Sonomagirl
 

Hi,
I'm on a very low dose of Mestinon. Only 3 times a day total 180 mg. A day. I have on again of again leg pain. I sometimes have to adjust the meds or go back on 20 MG a day of prednisone to get the pain to stop. Does anyone else have leg pain in mild cases of MG? My diagnosis was only 6 months ago.

Thanks !

Do you take Statins?
Mike

Sonomagirl
 

Yes Lipitor 40 mg

Unless my symptoms persist for several days I don't change my mestinon dosing.

Sonomagirl
 

The pain in my legs is so overwhelming I cannot do anything. Walking a few steps is painful and my tolerance is high. If I take 500 mg of ibuprofen it will ease off. Most of the time if it starts prednisone is the only thing that will calm it down. I have added spinach or Kale to green smoothies and that also will give some relief. Just trying to learn what works and does not. Any others out there?

My neuro-muscular took me off statins. He said they were one of the worst drugs on the market. I was so bad at the time I was considering a wheelchair. My legs got better right away when I stopped statins. You might want to discuss this with your doctor.
Mike

Sonomagirl
 

Thanks I will check on that!

I just tried Zetia but my MG would not allow it. But you may want to try it. My Mg is very complicated as I am positive for 4 antibodies. Oh as for my legs, I wasn't in pain but could only lift my feet about 2 inches due to weak muscles.
Mike

Sonomagirl
 

Since my cholesterol has been normal I'm now off of the meds. Only 24 hours and still having pain. I'm sure it has to get out of my system. It is an ache that just gets more intense unless I take something to calm down. When it starts the progression is rapid and cannot bare any weight on my legs. Doctor has not been able to figure it out. Thanks for your insight and experience.

Hope you are feeling better soon.
Mike