NeuroTalk Support Groups - Dealing with MG

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- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Dealing with MG (https://www.neurotalk.org/myasthenia-gravis/86689-dealing-mg.html)

Thanks everybody for the support and info. I noticed that taking mestonin makes my eyes twitch and now, as of today, my lips are twitching. It looks like my muscles are jumping. It's very annoying. This doesn't happen every day when I take it, just some. I don't know why. What do you mean by IV IG? I'm a phlebotomist so I kinda know most of the tests they do and why, but I'm new to this one.:)

Does your ankles turn easily?:confused: I have noticed that my ankles give out...and my legs are so heavy...I am wondering if this is due to neuropathy in my legs or MG....but mestinon really helps though....

My hubby installed some safety rails for our garage steps...I use the railings for support...I think I need to ask him to install me some safety rails in our big tub...I have been having some difficulty getting out of the tub at times...

Stephanie

Quote:

Originally Posted by ConnieS (Post 510403)

Hi Marcia! Welcome! :winky:

I have problems with the stairs as well, my legs just feel so heavy sometimes. Though I'm more afraid of going down stairs as sometimes my legs just give way when going down. I find holding on to the rails extremely helpful, and it'll be great if there's someone with you just in case. Different parts of my body twitches as well, so i think its probably ok?

Not sure if any of you have tried it, but I've found that certain kind of massages are great for relieving the symptoms. Am also able to sleep well after the massages, so perhaps its worth giving it a try! After all it does wonders to the aching body... :Popcorn:

Hi Marcia and welcome

http://en.wikipedia.org/wiki/IVIG Here is a link to info about IVIG, which is Intravenous immunoglobulin, it is a blood product that gives us a boost when our MG is flaring.

http://www.mestinon.com/ Here is a link to Mestinon, one of the side effects is muscle twitching. I get it in my arms and legs, it really is quite wierd to watch, thankfully I don't often get them in my face.
Hope this is helpful
Kate

Hi Stephanie!

Yup my ankles feel pretty weird too. And the ache a lott.. Its like my movements are more controlled, can't be as swift as I used to be. I used to run up and down the stairs a lot, now I'm sort of grounded to the ground floor. A lot of my joints ache more now, and it feels as if the joints are stuck. Though my case's still undiagnosed, so I too am not sure if it is a common symptom in MG. Anyone else experiencing this as well?

Do be careful in the tub! I slipped once and had a big bruise which took weeks to heal. It may also be a good idea to put non-slip mats in too. We've since had a stone seat installed in the shower area, so I can now take showers sitting down. :D

Quote:

Originally Posted by cricket001 (Post 510781)

My ankles are fine, it just affects my upper legs when going up steps. I'm fine going down the steps. I'm having a bad day today, lots of twitching in my eyes and face and it's making me feel sick in the stomach, plus I'm exhausted. My neuro ordered my MuSK test and just waiting for my insurance company to ok it. The neuro said if it comes back negative he wants me to go see a intra muscular specialist down at Penn State Milton S. Hershey Medical Center to see what his opinion is. I just want to start feeling better.

I WOULD have said that my ankles don't give me grief until last nite......turned it doing nothing and am hobbling around today........I have generalized MG and suffer from bouts of extreme weakness but never any problems with my ankles until last nite! WILD!

How many of you have general MG? How can we tell the difference?

I had my thymus removed April 22 of last year and am anxiously awaiting remission - my nuero did say that it usually takes 1-2 years to feel the full benefits of the thymectomy............all I do now is that overall I feel sooooo much better than b/4 I was diagnosed!

Can't wait to hear from you all!
Erin:D

Hi Marcia and Erin!

Welcome Marcia! :hug: This forum is great and you're gonna love it here. Are you feeling better already? Do hope your claim goes through so you can do the test quick. I haven't done it yet, but believe that the sooner we do it, the better! Is the mestinon starting to take effecT?

To Erin, I most probably am having generalized MG, with mild ocular MG. Didn't realize I was feeling weak, until the GP did a strength test by asking me to pull and push.. Do think that most of us will attribute our weakness to exhaustion so that maybe why most cases of mild MG does undiagnosed too.

Cheers to all of your fighting spirit!