Hello! Would you mind answering a question for me? It sounds like we are similar in that our problems center on breathing and fatigue issues, and some eye issues. I'm trying to get my mind around all this because when I read the books and some articles by neuros I get a totally different idea of mg. Like Annie said earlier, the pictures are extreme of people who can't hold their arms up at all after 45 seconds or are having to hold their jaws closed with their hands while their eyelids are almost completely closed up.

Okay so here's my question: Do you present with muscle weakness that shows up in a normal neurological exam? When the neuro asks you to hold up your arms for 30 seconds do they begin to fall? Mine will shake - maybe - depending on how much I've used the muscle in the last 24 hours. If I do a yoga pose, yeah, they're going to shake. (I've had this disease long enough to know better than to try to do a yoga pose! I'll pay and pay and pay for that in the next couple of days.) But, I can still hold my arms up, they won't fall. Usually after a 5 minute exam I'm out of breath, but none of my muscles have failed.

I found some muscle tests in one of the books I read and some of them I absolutely cannot do, but the neuros I've seen never go beyond the basic neuro exam. Things I cannot do are: lying flat lift up head and look at toes for 120 seconds, in same position do head lifts 20 x, deep knee bends 20 X. Others, like lift leg 45% for 100 seconds while lying down are extremely painful but I can make myself do them.

Any thoughts? Sometimes I think I have this figured out. Sometimes I think I've got it all wrong. So it would be invaluable to me if I can hear how other people respond.

Thank you for your help!!!!!!!!!!

Ally

Hi, Bluesky. I'm not any of those people but I'd like to comment if I can.

I think you should see a neuro-ophthalmologist - a good one. What you went through the other day with your eyelids not staying up is both scary and clinically obvious! I would think you could get an N-O to document that for you.

You need a different neuro too. This guy sounds completely out of his league. You can have a completely normal neuro exam, go out and run a couple errands and then be really weak. MG is weakness upon EXERTION and one or two reps of something doesn't necessarily weaken all muscle groups. MG is not predictable that way. A good neuromuscular neuro will test all muscle groups. There's even a test where you can go up and down on a couple stairs and they see how long you can go. Again, the more thorough, experienced neuros do those kind of things.

And yes, you should probably have an RNS, EMG and SFEMG by an EXPERT. Don't nickel and dime yourself by having one here and one there. It's too exhausting and expensive.

You need help and soon because it sounds like you are getting worse. Keep taking it easy, okay?

Annie

Hi Ally,

Well for me, I cant realy say I had muscle weakness for me it was more fatigue and sometimes it would be extreme, I think this was all on my real bad days, I would wake up and 3 hrs later I would be back in bed asleep for another 2 hours and then I seemed better in conjunction I noticed when im really fatigued thats when I have more breathing problems, I would wake up b fine then cpl hrs later get worse, I would have a nap, then I would be ok again till late afternoon. I am currently seen a private Neuro and she is fantastic I had a Repetitive nerve function and EMG done, and it wasnt until she tested my facial muscles that she agreed I have some deficit, hence why she has put me on the IVIg , previous neuro did the neuro exam, holding hands out and all but all my reslts came back fine, I have noticed latley though that I cannot hold my hands out for more the 30secs without getting pain as iff they are cramping up and weights have been put on them. if I were you I would def push for getting an emg test done, are you on any meds at the moment if so how are they to you? anyways im not sure if i answered all ur qns but feel free to message me anytime if I can be of more help, and if you like let me know if u want to chat on msn/facebook etc

take care have a great weekend and happy easter

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Hi Annie,

I was actually kind of hoping you'd pipe in.

The neuro-opthalmolgist is a really good thought since that's mine one sign that is very consistent and the droopiness, at least, I can usually bring on by squeezing my eyes together.

I've got referrals in the works with Dr. Howard and Dr. Richman (in California). I am understanding what you're telling me about going to an expert and not fooling around! I do have someone that's supposed to know about mg that I'm going to next week in Seattle. But you know what? The woman I spoke with at the MG Foundation mention a great neuro opth who works with mg a lot too. Maybe I should get on that. I feel a little like a hamster on his little wheel right now - trying so hard and not really getting anywhere.


It's great to get your feedback about how mg appears in an exam. Thank you! The neuros seem so sure of themselves. My experience has been the less the know the more sure they are. Ugh.

Anyway, thank you again for your good thoughts. As my son would say, "you rock!".

Ally

Thank you for replying!!!

Oh my gosh, you just exactly, completely described my life. Exactly.

And, yes, I get a lot of pain when I use my muscles. It can be absolutely agony.

How do we find each other on facebook? I have a page but it's just absolutely basic at this point.

Thanks again for helping me!

Ally

Ally, relax & take a deep breath...you will find your answer...I think my case may be somewhat different than most, the breathing on exertion (exertional dypsnea) has been the most debilitating for me...now, after the fact, I realize the extreme fatigue I was experiencing has been going on a long time & I blamed that on so many other things that it muddied the waters....when I moved to Tn, I made 5 (2x1000mile) trips with truck & trailer, & had been on Lipitor...so when the more extreme fatigue & dypsnea set in shortly after that, that's what I blamed it on....one Endo doc in Jackson, tn, told me I was in congestive heart failure so I should expect this, what a joke!!....after a cardiac cath in Nashville found me normal, the emphasis went to pulmonary...all those tests were normal, & after a bronchoscopy, minor changes were found & not explained...on & on goes the saga you all know well... .

I don't think my PE neuro tests were too helpful....seem to have enough strength in my hands & can hold my arms up ok 'til he pushes down on them, but I do have some resistance...now hip flexors & knee extension are a bust... I guess it was the repetitive EMG that settled the question cuz I didn't do well there...when I think 'bout it, standing for a length of time has always been too difficult for me, always looking for a place to sit...ask any questions, I'd answer if I can....keep your chin up & get a good neuro doc & those tests done....good luck

Dottie