Muscle spasms
Newly diagnosed with OMG, but the Mestinon worked so well on my leg muscle weakness and fatigue that they are looking more towards General mg. So far all of my antibody tests are negative though.
My question is does anyone else suffer from debilitating cramps? I have always had muscles spasms and have been on muscle relaxers for 20 years. Now my hands and feet are contorting in a very debilitating way and as soon as I lay down calve and feet cramps get so horrific that I am hollering out in the middle of the night. Constantly having to wrap Heat around my legs and feet. There are days that I cannot even hold a fork correctly because of the contorting spasms.
When I messaged my new neuromuscular doctor she told me to ask the Doctor Who prescribes my muscle relaxers to allow me to have more. I'm already on four Baclofen a day with a Flexeril added to the baclofen at night. She acts like it is completely unrelated.
Is this just me or has anyone else experienced this? If so are there any tips on how to deal with it? I cannot do stretching. I was in PT for something we thought was unrelated and no matter how much she altered my program stretching caused my spasms to become much worse.
Mestinon works in neuromuscular junctions by inhibiting the normal mechanism that eliminates excess acetylcholine. That's a good thing for people who are acetylcholine-antibody-positive because they have an antibody that is destroying large amounts of acetylcholine, and they need the extra. But make sure you are AChR binding antibody positive and are taking the proper doses of Mestinon. An over-accumulation of acetylcholine can cause earth shattering cramps, the kind your neighbors can hear.
Thank you so much! I will definitely read these.
what you’re experiencing sounds awfully painful. I apologize for the delay in my response, have you been able to find anything that brings some relief (I hope so)? I wanted to share a couple articles with you that I hope will be of help https://myasthenia-gravis.com/living/leg-cramps-night and https://myasthenia-gravis.com/living/coping-with-muscle-cramping. Thinking of you and sending well wishes! -Julie (team member)
