For those of you with diagnosed MG, do your muscles shake when you try to do things? For example when I go to the dentist for teeth cleaning I cannot keep my mouth open long enough, my jaw trembles because of the strain to keep it open. It affects almost all of my muscles though when I use them to some degree, such as holding a gallon of milk out my arm shakes. I have some of the symptoms of MG, but I am just trying to figure out if anyone is similar or if mine is another type of muscle disorder.

I am living outside of my area for my insurance so can't have any test done until the holidays but have been trying to find out what its like for others. I had a bunch of tests done a couple of years ago but nothing was ever figured out my neuro had never suggested MG and it was only till recently that I began to wonder.

I guess I am wondering how your muscles behave, besides just the general no energy feeling.

Thanks

Hi Syris,

Yes I definitely experienced a shaking sensation before my muscles gave out. It's almost like when you are really over exerting your muscles, but I would only be holding a cup of tea or something like that.

I'm off to work now, but I'll check in later to see if anyone else has replied.

~Kathy

My muscles do the exact same thing! Even when I smile too long, my lips start to twitch and shake! Granted, most of my symptoms have gone away now that I'm on 'roids, but they do that sometimes!

Before I was diagnosed even a gallon of milk was too much for me! Before my thymectomy I was trying to hang very small paintings in my dining room and my muscles simply couldn't handle even that. It was really scary!

Try to remember to not overdo it! If you feel tired, REST! This isn't something you can work through, as I learned the hard way (ICU for starters)

I am not trying to be a downer. I am just trying to make sure you know to rest when you can! Please take good care of yourself!

You may want to try and get into your dr's office b/4 the holidays (if it is at all possible) just to make sure you don't have a crisis - not fun!

Hang in there!
Erin

Hi Syris,

and welcome!
Yes I shake when I overdo things and am tired, my hands/arms tend to shake when I carry stuff or try to write, its usually resolved when I sit and rest. I also find its much worse if I'm unwell, have an infection or other illness.

hope this site helps you
take care
redtail

Hi Syris and welcome to the club!
I only experience that shaking during the leg and arm tests done for determination of the myasthenic score every time I consult my neuro.
And that happens only at the end of the test which is an indication that the limit is nearing…
So don't overdo it and learn when to slow down.
Maurice.

Neutro,

How long does your neuro test you for? Mine olny checks my eyes for 30 seconds and then makes me hold out my arms and tries to push them down for about 30 seconds and then checks my legs and head........does yours do the same?

Are you on Cellcept? I am and while I know it is helping, it has made me TIRED and have absolutely no appetite - weird!

Take care!
Erin

Hi Erin,
In France and Belgium, we used an Ossermann modified score procedure, which amongst others things, checks the holding of arms extended on the left and right side for a maximum of 2 minutes and 30 seconds.
For the leg check, the patient is lying down on his back, the legs up but bent at 90 ° and you should hold for a maximum of 1 minute and 30 seconds.
Your hold times give you credits (each 10 seconds = 10 points), the maximum total for all tests is 100. I'm presently at 95 but went down to 30 when I started my corticotherapy about one year ago.
If you are interested, I could translate the whole procedure and post it. I tried to find some US reference on Google, but what I could find was only the Osserman scale : I, II, III an IV.
I'm also on Cellcept: 2 g/day for about 14 months, recently reduced to 1.5 g…
Maurice.

Erin, I didn't answer your question on the possible effects of Cellcept:
My appetite is strong, even too strong but that may be due to the steroïds (20 mg/day)…
The only MG symptom left is a weakness in the legs, arms are now fully O.K. but that was the reverse at the beginning (very weak arms and legs OK), the switch occured after 5 months of treatment, when the streroïds (and Cellcept?) started to act.
Maurice.

How are you feeling today? I see my doc in a few hours for another round of blood work - yuck!

I wonder why my neuro doesn't test me the same way - I'll have to ask him when I see him next..........

It may be the steroids that have your appetite going so strong, cuz' even @ 20 I was ravenous. I also had more strength, so I miss it! When I was @ 80, I was a MAD woman! TRuly mad! I was eating 5000 calories a day (but only gained 16 lbs) and was manic, and had terrible panic attacks - YUCK!

How long have you been diagnosed with MG? I'm still a newbie and find every bit of info very helpful, so thank you!

Take care and let me know how you are when you get some time!
Erin

It seems our neuros test us differently around the world. Mine makes me do the "chicken dance" amongst other things. I have to bend my elbows and flap my arms up and down, then hold them up while he pushes them down.

What amuses me is that he does all these tests AFTER I've been sitting in a car with someone else driving me for 30 minutes, then waiting in the waiting room for 20 minutes, my body is rested, and then He gets frustrated when I say I'm not doing to well. I think he needs to see me after I've been rushing around doing a days shopping, but I'm always first up in the morning.

Anyway I've had my rant for the day. Hope your day is doing well where ever you are in the world!!!

redtail