Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Muscle twitching

Meng
Meng

Does anyone else have periods of muscle twitching? Usually in one or both calves - you can see it. Looks like ripples and sometimes feeels like a charlie horse. Never keeps me awake and seems to happen more when I have done too much earlier in the day or the day before. I always have muscle pain so not sure if they increase my pain. My muscles are tight and knotted - PT has said the muscles have been overused. For example the muscle that will twitch and spasm in my calf is the main one that helps elevate the foot. Also have low back issues but that is mainly on the right and both legs have twitches. I know mestinon can cause this but I do not think that is the full reason . Waiting for full B vitamin blood work and just found out I have low D. Also autoimmune thyroid (hypo) with recent medication increase. Just worries me as I have no firm dx of MG so still worry about other neuromuscular diseases. But my very first symptom was double vision. My eyes lids have drooped but only when really weak (and after a gin and tonic) and never at a neuro appointment...  All muscle weakness increases with use, heat, physical or emotional stress and gets better with rest, cold and mestinon. When this started (2015) I had NO PAIN - just weakness. The pain developed with trying to keep going with weak muscles I think. Huge knots in my neck that PT said developed because I was trying to stablize my head... Am on 40mg predisone and mestion now . That combo helps the weakness and has increased my ability to actually do things!!! Feels good but think I over do it... Just scared at the moment about things like ALS. Try not to let this happen but until I have a firm dx sometimes I can not always control the fears. Any comments would help... Have finally found a neuro who will help I think. Have a second appt coming up. Sent no records for my first as I wanted a new opinion. He wants tests results NOT office notes and said he does not care what other neuros have thought. He makes up his own mind!!! Last two neuro I saw thought it might be a conversion disorder or chronic fatigue.... They had shared info before the appt...I had no chance.

Nanosecond
Nanosecond
Meng, I have seronegative MG (confirmed through single fiber EMG). I take Mestinon, and I started CellCept 2.5 months ago. Both of my arms are twitching today. I have been going through a bad spell for the past few days. My arms are weak and painful and my legs are also weak. I am pretty much bedridden. This has happened to me so many times in the past that I am confident that I will be up and about again within five days.

I once showed my neurologist a video I made with my phone of my twitching arm, and she said that it was myokymia -- which is also what yours sounds like. See if you can catch the twitching on video for your neurologist to see.

My sympathies about your being told you have chronic fatigue syndrome or conversion disorder. The neurological form of chronic fatigue syndrome is usually referred to as ME (myalgic encephalomyelitis) and is very disabling. That was the diagnosis I had for years. I was relieved to receive the MG diagnosis because treatment is more standardized for MG.
As for conversion disorder.... yep, that was implied several times by male neurologists (I am a female). I used to respond, "I only wish my imagination were that good!"

I know that doctors seem to think that MG isn't painful, but my experience is that it is, particularly when I am having a flare like today. My arms hurt today, and the only thing that helps is to rest with them as still as possible.

It sounds as if you found a good neurologist!

- Nan
Meng
Meng
Thank you Nan! I know much of my pain comes from having to keep going because of no diagnosis, I kept trying to work even though I developed horrible headaches due to having to sit and hold my head up all day. No dx for headaches... no pain meds either. Just told I must have migraines. I do not. The headaches would disappear when I stopped working and kept my head and upper back supported.. then come back with any overuse of those muscles. It's the muscles in my neck, face, skull... spasming due to being stressed and overworked. PT always seemed to know this. Pain is certainly a part of this. But rest days do decrease the pain!
PeterL
PeterL
Interesting, I would associate this with the use of Mestinon, too much. Goes along with cramps as well. Tends to be 'suffered' during the initial stages of settling on a medication regime. That's my experience, for what it is worth.
Nanosecond
Nanosecond
Peter, good point. The twitching muscles can definitely also be associated with Mestinon, and it is probably worth cutting down one's Mestinon dosage to see if the twitching improves. However, I had the myokymia for years before I started on Mestinon.

Meng, it will be interesting to see if you end up with a double seronegative MG diagnosis like me. Maybe the limb pain and twitching is correlated to a seronegative subset. Please keep us posted!
- Nan
Meng
Meng
Nan - already double seronegative. That's a big part of the problem with diagnosis. I have had muscle tightness, leg pain and neck/back pain not fully explained by MRIs or inflammatory labs for most of my life. Even as a child I had "growing pains" into my teens. Never an explaination. Just told "well you have chronic pain" or maybe fibromyalgia... My hips have always twisted to the left - making my right leg shorter. Chiro would strainghten me out. I would do all the exercises but it just kept happening. And now - after almost 3 years of muscle weakness - my upper body is twisting to the right... So my theory is that the muscle weakness and my having to push myself - overworking weak muscles - has aggravated something that was already there. A lot of the pain I have now is familar but worse than ever before, The other weird thing is that over the past 2 1/2 years along with the muscle tightness and knots I have developed small lumps under my skin over muscles. No one seems to know what they are. PT thinks they are facia knots and said my dura is very tight. PT also does not understand why my joints have become more flexible even with really really tight muscles. Last neurologist who actually felt the lumps just made a funny face and said nothing. But then she is the one who said conversion d/o. I think with my current PT, Neurospine doctor and finally maybe an open minded neurologist I might get somewhere. I had Cushing Syndrome in the early 2000's Took 3 years for that diagnosis even though I weighed over 200 pounds, had a really round face, lump on my back and could have grown a full beard!. Textbook symptoms, Just told to see a therapist and diet/exercise. It was very frightening then and I try to control it but it is frightening now too at times. Seems if they can not figure it out easily they stop looking and decide you are just another too emotional over reacting middle aged woman... I know I am not alone - too common problem in our medical system/care. But there are some really good doctors - just need to keep going until you find one.
Nanosecond
Nanosecond
Meng, have you had a single fiber EMG?
throstle53
throstle53
That is something that is attributed to Mestinon. However in the summer prior to my MG "coming out", I was experiencing twitching, but only whilst I was resting/relaxing
Some strange condition is MG
Meng
Meng
Yes - both repetitive stimulation and SFEMG. At large well know Boston Hospitals. But although it is supposed to be "gold standard" with 90 something percent - if you read more about it the percent is more like 68 accuacy based on multiple factors. They never asked me which muscles were weak - when I asked they said they always just do three muscles - forearm, side of eyes and I forget the other. Also only did one side of my body. My weakness varies so much day to day that I wonder about the results. Would have liked to exercise the muscle they planned on using before the test. Was also freezing cold in the room and I always feels better when it is cold. But that is all part of the terrible degrading appointments I have had that I need to forget.
When I was first weak all over I would push though the day at work and go home to bed. When I was in bed - with my body supported and tried to relax my muscles would ping and twitch. PT feels it was because I had been over working them by staying upright. They kept firing when I tried to relax them. All day my shoudlers would be raised to help support my neck. My knees locked so they did not give way when I had to walk any distance... That made me wonder about lactic acid build up in my muscles. PT thought it was possible. Anyone have any experience or info? There is some reseach about MG and lactic acid but it is all old. Any info would help. Have an appt coming up with my spine doctor (the one who really thinks it is MG and does have a neurology background) as well as the new neurologist.
Specklove
Specklove
My leg muscles will spasm so bad at times my legs will actually kick out a bit. And it hurts