Twitches, muscle spasms, and cramping with MG

[MG Community Member]

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?

[MG Community Member]

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

[MG Community Member]

Hi, just wanted to send a quick happy holidays your way! We hope the season has been treating you gently.

With temperatures dropping in many places, I’m curious how the colder weather has been affecting you symptom-wise this year?

Best wishes! -Jodi, Patient Advocate

[MG Community Member]

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.

[MG Community Member]

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.

[MG Community Member]

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

[MG Community Member]

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[MG Community Member]

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.

[MG Community Member]

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.

[MG Community Member]

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.

[MG Community Member]

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

[MG Community Member]

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[MG Community Member]

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.

[MG Community Member]

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.”

[MG Community Member]

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.

[MG Community Member]

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

[MG Community Member]

Ben, thank you for taking the time to share all of this. It’s beneficial for all to hear the path you’ve been on and what you’ve figured out through trial and error.

The way you described the shift from standard dosing to experimenting with the extended-release Mestinon makes a lot of sense, especially since side effects can show up so differently from person to person. It’s clear that you’ve been paying close attention to your body’s signals and how the medication affects your day-to-day functioning, especially with the cramping and the eyelid twitching you dealt with early on. That kind of self-awareness is huge in this journey and serves as an excellent reminder for everyone.

MG cramping can be miserable, and many members talk about how unpredictable and stubborn it can be. Stories like yours help remind others that sometimes the first regimen a doctor suggests doesn’t work for everyone, and that working with a care team while also observing your own patterns can be an essential part of managing MG and finding what works for you.

-Jodi, Patient Advocate

[MG Community Member]

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.

 

[MG Community Member]

Hi there, it’s really good to hear from you again after a few months. I’m glad you checked in, though it’s unfortunate to hear you’re dealing with so many complex layers of MG.

I can’t give medical advice, but what you’re describing makes sense as something to bring back to your doctors. Muscle cramps can be a known side effect of pyridostigmine (Mestinon), and some MG folks in our community also report cramping not associated with treatments, especially in the calves and feet. Here’s a discussion I think you’ll be interested in: https://myastheniagravisnews.com/forums/forums/topic/pain-and-myasthenia-gravis-2/.

For erectile dysfunction, there are several possible pieces in the mix. Type 2 diabetes on its own is a major risk factor for ED. Long-term opioid use can affect hormones and is also linked with sexual dysfunction, including ED. Antidepressants such as duloxetine are another potential factor.

Because there are so many possible contributors in your case, the safest path is to talk directly with your primary doctor, MG specialist, endocrinologist, and possibly a urologist. They’re the ones who can look at all of your medications together, check hormones if needed, and decide what is safe to adjust or investigate further.

Please keep looping your doctors in about both the cramping and the ED, and update us any time you want to talk through how it’s going! -Jodi, Patient Advocate

[MG Community Member]

A lot of MG sufferers take supplements. I just wanted to add that B6 can cause muscle twitching. It’s fairly widely known that B6 can cause neuropathy in high doses, but it can also cause muscle twitching.

There are supps out there that sell B6 in recommended doses of 50mg or higher, which is ridiculous. I have malabsorption issues so the RDA generally does not work for me. I was taking 9mg of B6 in a sublingual (~5x the RDA) and it caused bad muscle twitching. This was less than 1/5th of the recommended dose of 50mg on the supps I use. But it still caused bad muscle twitching. I reduced the B6 to ~2.5mg (1.5x the RDA) and the muscle twitching disappeared in a couple days.

[MG Community Member]

I seem to have more with mestinon but I am also taking the red flag gabapentin in a low does and it has helped a bit but still get some crapping just not quite as bad. I would cramp so bad at times in my legs that my muscles hurt for days when I walked but now I still get the cramping just not quite as bad.