Forum Replies Created

  • Dean Counts

    Member
    March 9, 2024 at 1:12 am in reply to: Mestinon and muscle twitching

    I’ve been on Mestinon 60mg four times a day for over 10 years. That and a Thymectomy many years ago seem to work well keeping my Myasthenia stable. I do have muscle twitching, mainly in my lower legs, but it doesn’t really bother me other than it can be annoying. A little scary at first since my Neurologist casually mentions it can be a symptom of ALS. But he said it was benign twitching and is caused by Mestinon. Cramps bother me more but my Neuro recommended using magnesium supplement and that helped a lot. Still have cramps in lower legs and feet from time to time but I can deal with that.

  • Dean Counts

    Member
    August 6, 2021 at 10:56 pm in reply to: Cramping and Joint Pain From Mestinon

    I’ve also had cramps in leg, foot and thigh. Talked to my neurologist about it a few years ago. He didn’t tie it to Mestinon, which I’ve been on for 8-9 years, but he recommended adding a magnesium supplement and that’s helped immensely. Still have them from time to time but not every night and not as intense.
    I’ve also used the mustard remedy (used by sports teams) when they were particularly intense and it worked pretty well. Downing a packet of mustard (or teaspoon or so) isn’t that pleasant but it does help pretty quickly.  I understand it’s the turmeric in it.

  • Dean Counts

    Member
    July 9, 2021 at 8:06 pm in reply to: Reaction to IVIG Treatment

    I was originally diagnosed in 2012.  I had IVIG treatments in 2017 and 2019, both home infusions, for exacerbations.  Luckily I had few side effects mainly fatigue. But they worked well for me.