[TxSimon]

Just before Thanksgiving I had some speech problems that were diagnosed as pertaining to my MG. I could not get words to come out of my mouth, but knew exactly what I wanted to say. I had to speak very very slowly and it was so frustrating to me. I am a radio dj and this was very terrifying to me, as it has never happened before. It is frightful for a man who likes to talk also! I just wanted to ask for feedback from others who might have similar problems with speech. I have another friend who has MG who tires quickly and his speech just becomes garbled, but he hasn't had a problem before with not getting words to come out. Please let me hear some feedback, it would be appreciated.

[AnnieB3]

Geez, I'd tell your neuro if you haven't already. What if it's not the MG?

I can only sort of relate, since I was a DJ in college. I guess it would be like me losing my sight (as a designer). Not good. Yeah, and terrifying.

It sounds to me like your brain had trouble getting words out, not that your mouth/jaw/tongue muscles were weak and that was the cause. Is that how it felt?

Just to be sure, go see your neuro. I'm sure, since you love to talk, that it could just be the MG since muscles get weaker the more they're used!

Annie

[TxSimon]

Annie,
I went into the hospital and my neuro ran test to make sure that it wasn't a stroke. He came to the conclusion that it was associated with my MG. It hasn't returned, thank God, so we are watching to make sure if it does that he is on top of it.
Thanks,
Simon

[Nicknerd]

Hey Simon,

When you say that you couldn't get the words out, do you mean that it was because of weakness, like tongue or palate weakness, or maybe actual voice weakness (laryngeal)? I've got major problems with my speech, that's my main area. I too know exactly what I want to say, but it's very garbled, 'mushy,' and slurred...How long did the episode last, and has it happened since then?

I know that months before my speech became really 'bad,' I was very aware of speech at times when articulating. It was as if I had to 'think' about each word as I was saying it. It was very strange. I think that weakness was occuring on a level that I couldn't pinpoint, so wasn't consciously aware of it being caused by 'weakness,' but just aware that something was 'up' in that department.

I completely empathize with you. Losing the ability to speak is extremely terrifying. I was also a major chatter box, and have been singing for most of my life.

Let's hope it was a brain fart. Sometimes the speech can be affected with MG and it's not too severe (from what I've read about other people's experience). You might just have an episode or two, and it'll go away. For example, I've had very few episodes with ptosis- ones that I could count on one hand maybe. Maybe you were just very, very exhausted. When I'm very tired, muscles that are normally not affected by my MG become affected (like my eyelids, with a touch of DV), but it's very unusual for me.

Nicky

[TxSimon]

Nicky,
It was like my tongue was big and it just wouldn't work right. Maybe I was tired and just didn't realize it, as much as I talk...lol.....!!!! The episode only last on and off for about 20 hours and hasn't returned, so you might be right in that it will not return. That would be fine with me....as I didn't like that feeling of not being able to talk right...lol....!!!!! Thanks for your feedback.
Hugs,
Simon

[DesertFlower]

Simon,

I have trouble speaking sometimes.

Before I started Mestinon it was hard to speak, it is so frustrating and emotionally painful not to be able to say what you want to say. Sometimes my mouth would just not say what I wanted to say. My voice actually changed and I had difficulty making noise come out of my mouth. It is hard to describe what it feels like.

Now that I have been taking Mestinon for a while (5 or 6 months I think) I don't have major speech problems. But I still can't talk as much as I did before MG. I have always been a fast talker and I am working on training myself to talk slow and it is so hard to change, I actually skip saying some of my words since I am used to saying it all so fast. My opinion is that once I learn to say everything slowly that I will be able to communicate effectively again.

I do lose my ability to speak if I get stressed, which causes more stress since I am unable to talk about what is bothering me. My husband tells me I go and "hide" when I get stressed and he doesn't like it. What else is there to do? If I keep trying to talk I get more stressed and then I feel even worse MG symptoms coming on, too dangerous to stay and continue trying to talk! Resting does return my ability to speak.

Now that I think about it, double vision and speech problems are the first sign that I need to take Mestinon or rest, they are like my danger signal and I have to stop what I am doing and take care of myself (or face worse symptoms).

Simon I hope you don't lose your voice again. This is no fun.

[alice md]

simon,

sorry to hear about the hard time you are having with this illness.

it's hard to give someone any advice, because what works for one, may be quite the opposite for the other.

all I can say from my own experience, is that what may be quite overwhelming initially, can be dealt with eventually.

and that it is possible to find innovative ways to do almost everything, even be a DJ with occassional speaking problems, if you are ready to make the effort to do that, and find those that will help you with it.

from my experience at least, more times then not, if you are ready to honestly discuss your dissabilities, as well as what you do have to offer, people will be quite ready to accept it.

my rehab physician once said to me-if someone wants to succeed in climbing the everest, he/she has to be well prepared, and we each have our own "everest", and if we are well prepared for it, we can eventually climb it, without crashing or having to be rescued.

I hope this never happens to you again, but even if it does, I am sure you will find the way to work around it.

alice

[Nicknerd]

Hey Simon,

When is Thanksgiving again, in the US? I think that was a couple of weeks ago, right? That's a pretty good sign, I think, that it hasn't happened since then. What are your main areas of weakness, and how long have you had MG? I have this gut feeling that it was just a thing where maybe you were very tired, and the MG sorta started to affect a muscle group that it normally wouldn't, like what's happened with me a few times. Hopefully, if it does affect your speech, it'll only happen to a very mild degree, like with me and the ptosis/DV.

Hey Desert,

I know- the speech thing sure does suck! It's good that you stop yourself when you're getting stressed, so that things don't get worse. I agree that it must be tough to bottle up your emotions in order to prevent further weakness. I usually just continue talking as much as I can, even when I'm stressed, which is prolly why my speech ends up getting so slurred and completely nasal. Many times in the past, I've ended up writing things down for people if my speech starts to get very bad. At first, it was due to embarassment. I didn't want people to see that 'side.' My facial muscles get really weak too, where I can't close my mouth tightly. It's just a big mess when the weakness gets bad. But yeah, speaking slowly, with a bit more volume, helps to articulate- but sometimes, people think that I'm mad, but I'm just trying to articulate.

The trials and tribulations of this disease!


Nicky

[TxSimon]

Nicky,
You are right. Thanksgiving was a few weeks ago and things have been good. I had one minor instance this past weekend, but I was very tired, so I think that might be a trigger. Thanks for all your feedback, it really helps to hear others and what they have gone thru.
Simon

[PMCPMC]

when i took steroid 60mg per day
mestinon 60mg every four hours
the pred. had not kicked in on
so all the work was being done by the
mestinon if you were late afer 3hrs i were left asking for a coffee in klingon
speech perfect now with pred working.
now anybody know how to get neck muscles working ?