[Ilene Schwartz]

I’m 70 years old and have had MG since I was 23.  I had a thymectomy about a year after my diagnosis and within a few years after surgery, I felt a lot better.  I never associated cramps and joint pain with Mestinon/Pyridostigmine (60 mg every 4 hours) until the past few years.  Periodically over the years I got leg cramps and foot cramps, mostly after exercising or wearing tight boots for long hours.  A few years ago I started to have some muscle spasms.  Not particularly painful but very noticeable.  I mentioned the spasms to my neurologist and that’s when he said the spasms are associated with the medication.  He gave me a prescription (can’t remember the name of it) but after reading the side effects, I never took it.  I was able to cut back on the Pyridostigmine (30 mg every 4 hours) and the spasms/cramps went away. More recently I increased the dosage back to 60 mg every 4 hours, because of some droopy eye issues and that’s when I had very severe pain in my inner thigh, an odd place I thought.  I cut back on the meds again and the spasms/pain went away or is very mild.  When I do get cramps, I use Icy Hot/Ben Gay/Biofreeze immediately and it seems to take away the cramps/pain almost immediately.  I do jump up and start walking around immediately as well.   This forum has been very helpful since I didn’t realize others were experiencing the same things.  Also, for those more recently diagnosed, I hope you manage as well as I have for 47 years.  My thymus gland has grown back but no further treatment has been recommended.