[Sadiecl]

I have questions about muscle spasms with MG. It is my understanding that MG doesn't cause spasms, but I have a terrible time with them and they are much worse when I am experiencing worsening MG symptoms. My legs in particular spasm but it can be my shoulder/arm muscle, etc. Many times they wake me up at night or keep me from getting to sleep. My entire leg will tense up and shake like a convulsion or siezure. They last for 10 or 15 seconds. Sometimes I can feel tension building up and have to keep stretching and changing positions to keep them from starting, but sometimes they start spontaneously. Sometimes I get a sudden pin prick like itch that will trigger them, or if my husband accidentally touches the bottom of my foot with his toes it will also trigger them. All my lab work looks good so I know it is not vitamin or electrolyte imbalance. I am still undergoing testing for MG and do not have a diagnosis, but I am on Mestinon and it does help my muscle weakness.
I'm just wondering if this is something that others have experienced.

[southblues]

I sure have muscle spasms. I don't know how to explain why.

[AnnieB3]

Hi, Sadieci. Do you have any circulatory issues that you know of? Heart issues?

Are you on any drugs (other than Mestinon)?

Cramps and spasms are not a primary symptom of MG, but they are a secondary one. And so is pain, as doctors are now admitting!

When athlete's, dancer's, or weight lifter's muscles become weak from overuse, they can cramp or spasm. MGers muscles just do that far faster.

My chest wall muscles cramped up and went into spasm right before my MG crisis. That was the only time I've experienced it in those muscles, but I've had it in others. After my crisis, I was holding a mirror with my left hand, putting makeup on. The hand contorted so badly that I momentarily thought I might be having a stroke! I hadn't been able to squeeze the urgent care doctor's fingers before being admitted to the hospital, and it hadn't gotten much better yet.

If I walk too much, my calves and feet will cramp up, usually between Mestinon doses.

Unless you have blood tests (electrolytes) when the symptoms are present, you might not "catch" them in the act. They often don't test for magnesium in a regular chem panel, so check your labs for what was done.

Hormones can cause all sorts of issues as well. Have you consulted with an endocrinologist?

If you had your B12 tested, being in the "normal range" does not necessarily mean that it's normal, especially if you have symptoms of a deficiency.

I hope you get some answers soon to all that's going on!

Annie

[Sadiecl]

My tremors continued to get worse and worse every day to the point my whole body would shake. I looked up your posts on B12 deficiency and also studied the symptoms of Magnesium deficiency and have started taking supplements on my own since I am not able to get into my doctor. I took 4x the RDA magnesium and 1000mcg B12 just to get a good jump start. I plan to back those off to a maintance level soon. Two days later I'm not having any twitching or tremors. Thank you so much for your guidance and research. I am very grateful for the support and education I have received on this forum.

[AnnieB3]

Sadieci, If you read my post again, you'll notice that I did NOT recommend that you take magnesium!!! Too much magnesium can make MG worse. Most people get enough from foods (i.e., nuts).

You don't want to mess around with electrolytes. First, if any of them are out of the normal range, that can reflect any number of different disease states (i.e., Addison's disease). Causes for an imbalance should be sought by a internist or an endocrinologist (preferable).

Too much or too little potassium, magnesium and calcium can make MG worse, so please don't go playing around with taking them until you know if you have a problem!

Is there a doctor you can go to?

B12 won't hurt you, but I hope you got the methylcobalamin instead of the cyanocobalamin.

Does that make sense?

And when you're trying to see what makes something better (or worse), it's best to take only one thing at a time to know which one is doing that!

Annie

[pdsmith]

I had Muscle spasms when I 1st started Mestinon and that is one of the side effects. I still get them once in awhile. I have a slightly high Calcium count and slightly low Vitamin D deficiency due to taking adiuretic in my high BP medicine. The doctors tell me to increase my Vitamin D supplement to lower my Calicum but that just causes more muscle spasms so I just take Calcium by itself when I get the spasm and that seems to work. If it is caused by the mestinon it should subside as your body gets used to it.

[Sadiecl]

Ok, this is a new thought to me. I deffinately feel that the Mestinon makes me stronger but had come to the conclusion that it was the cause of the spasms and therefore must not be what my body needs. So, I guess you are saying that that isn't really the case? I am now off of the Mestinon because my tests were all neg for MG and my muscle spasms have stopped.
Forgive me if I try to self doctor. I know it is a bad idea to do self diagnosing and self doctoring, but at the time it is the only doctoring I have available. My neurologist saw me one time, ran a bunch of tests and when they failed to show a cause, her nurse called and told me to see a psychiatrist. She WOULD NOT make a follow up appointment. It is a month before I can get into another neuro. My family doc says that my case is way over his head and he is afraid to treat me. My pulmonary doc also won't treat me without a diagnosis.

[Sadiecl]

Within hours of my last post I had a "crash". My face started feeling numb and then went droopy, next my arms started feeling weak and within moments my whole body was week and shakey. My hands get ice cold, my face gets hot Then I get this crazy nerve racking sensation of being hot and cold at the same time that feels like thousands of burning/itching pin pricks and feel twitchy and jumpy and that led into convulsions. Same exact progression and symptoms as before. So now I know for sure that it is not caused by the medication since I have been off of it for two weeks.
Every muscle in my body is sore from the tensing up, even between my fingers and the muscles on the tops and bottoms of my feet are sore!
I took Mestinon (had some left that I was saving just in case) and it stopped the crash but it only lasted about 6 hours and the weakness/convulsions started again. Took another Mestinon and it helped again but my legs still feel twitchy. When I touch my leg I can feel tiny muscle twitches popping all over my legs. Ugh! Managed to get to sleep for amyoclonic seizure bit only to be woken up by a very strong convulsion. Praying for answers! I know that the shaking is not a symptom of MG so apparently I have multiple issues. Perhaps myoclonic seizures?