I have been trying to get a diagnosis for 6 months. 3 Neuros later, still nothing. MRIs and vision evoked tests seemed to rule out MS plus I don't have sensory issues. I get tired after using muscles. Can't sit up in a restaurant without leaning all over the table. LOL
My head flops to one side after sitting at church. Large muscles are weak and so is my tongue. So MG was mentioned by my last neuro who is passing me to a more experienced neuro. I have asked them if muscle twitches (in large muscles of arm, legs or back) occurs in MG?
They say the meds can make it happen but I'm not on meds. So I wonder if anyone had jumping muscles before they were on meds?
No pain or cramping, just several large muscle twitches?
I have less twitching after taking CoQ10 but it might be unrelated.
I am worried about an ALS diagnosis but I am better after rest which seems like more of an MG thing but the muscle twitches worry me since they are common in ALS.

Welcome This is a great site and I hope we can help you. I have MG {over 18 years} and I don't take medication for it but I do get twitches, when asked my DR about it he said some people with MG get the twitches. Also remember that people with MG also usually have another autoimmune illness as well so have your Dr run all the tests. MG can be very frustrating but with this group of people it makes it easier to deal with.

Good luck and please keep us updated.

Hey Jellyfish,

I've had muscle twitching in my feet for as long as I can remember. I can actually see the muscles spasming...At around the same time I began experiencing severe nasal/slurred speech (Dec./08) , I started experiencing tremors in the fingers of my left hand...I have a lot of weakness in those fingers too....These 'symptoms' don't really fit into the MG picture either, apparently...

I hope the docs. can figure things out for you as soon as possible...I know the fear you're experiencing and the sadness that comes with not being able to communicate very well anymore....

Do you have any ocular weakness? Have you had a CT scan of your chest? I don't really have any ocular weakness, which is what made the diagnosis kinda tricky...It turned out that I had a thymoma, though, so that seemed to really confirm things as well as the blood test for antibodies and SFEMG.

I wish you luck in a speedy diagnosis! Don't forget to ask any questions you might have...The people on this site are very welcoming and knowledgeable!

Nicky

Hi, Jellyfish. I know that people with muscle twitches/fasciculations immediately think of ALS. Who wouldn't? It would be a very scary diagnosis to have. But the truth is that most of them are benign or caused by other NM diseases or things like electrolyte disturbances.

Have your doctors done other tests like a chem panel or thyroid panel? Did they run the MG antibodies? You don't have to even be a neuro, let alone an experienced one, to have those done!

ALS does have fairly constant weakness. The tests they ran are not specific for ALS - no test really is - though there are more specific tests. I hope they will do all the MG tests for you, which include: Acetylcholine antibody panel (binding, modulating and blocking antibodies), MuSK antibodies, RNS (repetitive nerve stimulation test) and an EMG or Single Fiber EMG.

Do you have droopy eyelids or eyebrows? That is often one of the first signs of MG. You may not even notice it. Look at your eyes in the morning. You could even take a photo of them. Then do what's called the upward gaze test where you look up with your eyes towards the ceiling, keeping your head still. Then look at your eyes again. Any drooping?

Other things that you can do to test if your muscle weakness is "fatigable" (gets worse with activity) is to walk up and down a stair, like the stair stepping exercise. One foot up, then the other and then one foot down, then the other. Or hold your arms out in front of you and see if they get progressively weaker. One doctor I had gave me water to drink and told me to keep taking one sip at a time. That was very revealing! But I wouldn't recommend doing that one since making your swallowing muscles weaker is NOT a good idea.

Do you get worse after activity? Being out in the heat? Those make MG worse. MG is all about weakness that gets worse after exertion or repetitive activity. Some people do get muscle twitches. When I've overdone it, my upper arms will twitch. So it is related to MG too.

It's hard waiting to find out what's going on with your health. Excruciating really. When do you see the "expert?" I hope it's soon. In the meantime, just in case it's MG, stay out of the heat and take it easy. Any signs of shortness of breath that is really bad or inability to swallow means going to the ER right away. There they can do breathing tests or arterial blood gases to see what is going on with your breathing.

Until you know, just relax. Try to do something to get your mind off it all.

Annie

Annie
That is what I have been told also, by my present neuro, I get twitching all over, you can see the fluttering, in the weak muscles.
Mary

Hello there! I have had muscle spasms/twitches for years - wayyyyyy before I was dx'ed with MG.

Hope this helps!
Erin

All this info was so great! Thanks everyone!
Today's new neuro mentioned Polymysitosis (I have no idea how to spell it). I had a droopy eye lid for a few days. It was so wierd I took pics to show my neuro! LOL ...NOT attractive!!!
They are doing a ton of bloodwork, musk thingy too.
30 years ago I was diagnosed with RA but I have ignored it for a long time. Retesting for it 5 months ago, it didn't show up. But I had 2 doctors do the tests way back when, and both were positive.
My muscles are sore tonight from too much activity. I walked my dog a little bit while my hubby did his obedience class (for his dog) LOL
Now my muscles are jumping and tight. I can't participate in the dog class any more so I just watch. I showed dogs for 30 years and now I just sit. I showed horses too. Now I'm just a jellyfish!
But it's cool cuz I met a guy at dog class tonight who has MG! Small world. But it's so great to talk to all of you and hear your stories! It makes a difference in my world because I wonder if my family really believes I am struggling.

I did the upward gaze thing... my eyes seem to be pretty strong except for that few days of droopyness with the eyelids. No double vision.
As far as stairs go, I used to be able to slowly walk up a flight of stairs at church, but now I stand at the bottom and make my daughter go up there to relay a message! LOL
I can only do about 4 stairs. There are so many places I don't go any more because if I get in, I'll never get back to the car!
I went to the thrift store and at the back of the store I almost had a panic attack thinking, "how am I going to get back to my car"! Anxiety sets in if I have to walk too far away from the car, so I ride store scooters at Walmart and drive around for 20 minutes to get a close parking space! Its changed everything I do in just 6 months!

Hey hon! It does get better! I know what you mean about the panic attacks. I finally had to start taking xanax, b/c @ 80 mgs of pred I had some wicked ones!

Are you on any meds? I know that they have really helped me! Has your dr spoken with you regarding thymectomy? IV IG? Plasma exchange? There are SO many different avenues for all of us with MG that you needn't worry.

It does get better! It really does! MG can be a very scary and LONELY disease, but this forum is a great site to reach out to others that really and truly understand what you are going through!

A year and a half ago I was too weak to do anything and now I am heading to upstate NY to see my niece! NY! From Texas!

Hang in there!
Love,
Erin

Wow, you live in Texas too
Sounds like a big trip! I would never be able to walk the airport, I would never make it from the parking lot! LOL
I found a cheap power wheelchair so I could go to the mall with my teenage daughter, she's 13 and just HAS to shop!
Luckily I can handle Starbucks on my own power! But I end up leaning my elbows on the table to hold my head up... its all new to me!
I'm not on any meds, I guess they want to know what I have first. My therapy is my dog. He keeps me entertained and busy. We can go for short walks in Petsmart on good days. This weekend is Canton. The largest flea market in the world, and I always go. I have missed it for 5 months but I am going to charge up the power chair and head out! I can hardly wait!!!
My neck gets really tired in the power chair though and even my tongue gets weak! I went to the mall in it for about an hour and poof! My tongue was done! My front neck muscles get messed up but it feels so good to be able to cruise around and see things! I haven't been out in months because I walk with these tiny little baby steps because it feels like my legs will collapse.
I am the ultimate jellyfish!