[John]

I noticed spasms or slight twitching start after extreme stress and when heart is racing or my thoughts the same way. Take a few deep breaths and try to calm down. Had an EEG that was negative, but my Neurologist thought it could be epilepsy?? Dont think so. Or that it’s related to MG bwdik?

[Jodi]

Thanks for sharing this. Stress really seems to amplify a lot of things for many people with MG, so it’s intriguing that you notice more twitching when your body is already worked up. These odd sensations can be hard to pin down, and your experience adds a lot to this conversation. -Jodi, Patient Advocate

[shawna-barnes]

I get twitches when I take my pyridostigmine bromide (mestinon) too close together, but it wears off as the med is metabolized. I will sometimes get cramps in my feet or legs but that is usually due to low potassium.

I also get hand cramps and contractures, but that is from something else.

And I have cervical dystonia, which is its own sort of fun.

I think all the co-morbidities play off one of each other and when one is flaring the others join the party. Sometimes it can be difficult to tweeze out which symptom goes with which disease/illness. But that’s where knowing your body and having a good relationship with your care team comes into play. At least for me, my care team is great at responding to my messages when something “weird” crops up.

[Junker]

I would usually be plagued by cramps at night, especially when I had intensive physio exercises or or other exhausting activities during the day. I have been learning over the past two years not to train into exhaustion and to avoid physical overexertion.

And, as a matter of fact, susceptibility to those cramps has been decreasing. Maybe because of my progress in getting to know my diseased body, maybe due to the ongoing reduction of mestinon doses. Hard to say what was the decisive factor and if this is really going to be a consistent appearance.

I will continue to observe and take notes.

[Jodi]

I’m glad you shared that things have been easing up for you. That kind of progress gives others hope that change can happen over time. -Jodi, Patient Advocate

[Kent Moore]

I absolutely deal with muscle cramps/spasms and twitching — every time I need to take Mestinon. This is usually in the last couple weeks of my cycle between Vyvgart infusions. I’m dealing with twitching as I write this reply. A week from today I begin my next cycle and I’ll immediately stop taking Mestinon. I’ll also immediately stop having the cramps and twitching.

About a month goes by between my last Vyvgart infusion and when I begin my Mestinon. During that period of time, I don’t experience any of these side-effects…until I start it up again. So, for me, Mestinon = twitching and cramping. All of this, however, is better than the alternative of difficult speaking, chewing, and overall fatigue.

[nannymcv]

I started having muscle spasms when I was on my last week of Vyvgart infusions which was my third round of them. As soon as they started the infusion I started with muscle spasms. They stopped the infusion and after about 5 ór 6 minutes, they let up but moved to my lower back for another 5 or 6 minutes and then finally stopped. The infusion center took me down to the ER and they checked my heart out did blood work and everything seemed fine but by the time I back to the infusion center, it had been too long so the medicine wasn’t any good. About a week later, I had my last infusion for that round. The infusion center started at a slower rate and it was ok but then they sped it up and the spasms started again so they stopped it until they stopped and started it back slower again. I finished that one. Two months later I started my fourth round. Same thing, the spasms started again so they slowed it down and it was ok. Second time they started slow and it was fine. It just takes longer. I know this was long but my Neuro Dr said he had never heard of having spasms with Vyvgart.

[CAPacheco]

For over 3 months now, I have been experiencing severe cramps in both legs and feet, sometimes in my arms and hands. They occur day and night. I discussed with my neuro and he seems to think it has to do with the combination of my current treatment (Rystiggo) and mestinon. He recommended decreasing my mestinon – saying he would like to wean me off of it completely. I’ve lowered the mestinon dosage; still having cramps in my legs and feet. I previously took potassium because I thought it would help but it didn’t. I suffer from frequent eye twitching that I also complained about. That has not subsided either.

[Jodi]

Dealing with symptoms day and night can be exhausting, especially when you’re not seeing relief yet. It sounds like you’ve been working hard to sort through what’s going on, even when the answers aren’t immediate. Your honesty here will resonate with many people who are in the same spot. A lot of people in this community experience leg and foot cramping, often painful. Here is a relevant discussion: https://myastheniagravisnews.com/forums/forums/topic/pain-and-myasthenia-gravis-2/. -Jodi, Patient Advocate

[miche]

Mestinon will increase spasm and cramps and also the lack of magnesium. I take 250mg of magnesium before bed and switch from Mestinon to Huperzine A, no more cramps.

[CAPacheco]

I’ve been told in the past that Magnesium is a “no no.”

“Magnesium can worsen MG symptoms by inhibiting acetylcholine release at the neuromuscular junction. This can lead to increased muscle weakness and respiratory difficulties.”

[miche]

I believe the problem is with IV magnesium or massive dose. Magnesium is super important for many functions and is helping my cramps and sleep.

[Ben]

Hi Jodi,

I’m 62. I was diagnosed Fall of 2020 by a Neuro-Ophthalmologist. In January a Neurologist started me on Pyridostigmine (Mestinon) 60mg every 4 hours. My eyelids twitching began and was horrible. I complained to the NP that my quality of life was bad ( I love to read) and my work was suffering (Mt Neuro went out on maternity after my first visit and by chance so did my Neuro-ophthalmologist.)

side note Prednisone gave all the complications pred does, plus exacerbated my body pain. A month later at the office visit. I convinced NP to let me try the 180mg extended dose. The twitching was slightly better. Then since the tablets were scored. I tried 1/2 of the extended pill every four hours and the twitching became less and then was gone. For a long time I only took three 1/2 pills. Anymore and the leg, foot and hand cramps became intolerable. I’ve had to build myself up four 1/2 pills (2 full 180mg) overtime. I get foot cramps now and again on this regimen but nothing like they were first.

What helps me is taking note how bad a knots on soles of my feet, calves and thighs. I use my knuckle to break them apart. I also note if a knot in my foot makes a thigh or calve muscle twitch and work that location as well. This seems to keep the cramps at bay. I’ll be investing in an acupressure tool to help with the knots.

Note: the act of breaking up the knots is painful but it’s short term compared to cramping feet and legs throughout a night.

Regards,

Ben

[Robert Studebaker]

I have gMG with antibodies since early 2018. Started as ocular and rapidly advanced to generalized. I am on Mestonin, Zilbrysq and will soon be on Vyvgart as well in a test. I get severe cramps in both legs all the time and sometimes in my feet. Sometimes it is both legs at once. I have no idea if it is related to the MG but I find they occur more often after some sort of exercise, primarily just walking. I have always thought it is because since I don’t exercise any more, my muscles were just reacting to strain they are not used to. I am an ex-division one football player so I used to exercise a lot.

My question to the group is about erectile dysfunction. Not joking. Since I started taking all these drugs, I have that problem. Besides the drugs I am taking now, I’m on metformin, glipizide and insulin for type two diabetes and I take duloxetine for depression. I’m on oxycodone for my back and shoulders but I have tried stopping it, hoping the ED would improve, but it did not.

Prior to Zilbrysq, I have tried Soloris, Ultomiris, IVIG and Rigstiggio for the MG, but all of them would wear off about two weeks before I could take another cycle. When they wore off and I was not on oxycodone, is the very definition of misery.

So, if anyone has the same problem and you think you know what it is causing it, please share.

BTW, I have tried the big 3 for ED. None of them help.