Speech problems - need feedback
 

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.

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

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

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

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

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.

:hug:

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

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!

:grouphug:
Nicky

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

Simon Patrick here
 

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 ?:p

No problem, Simon! I agree that it helps to much to have others who can relate to our experiences- Excellent news that it hasn't really recurred, albeit to a tiny degree!:)

Hey Simon,

That is scary when something new like that happens out of the blue. With any luck it will just be a one time thing. Take care and keep us posted.;)

Hugs,
Pat

I see from others that you are not alone, I too get this at times and my Dr. ran all kinds of tests and said the same thing.. must be MG related. The trouble with MG, in my opinion is that if the Dr. doesn't know what it is than it is said to be the MG. So I myself just say OK, and don't report things anymore, gets me to aggrivated to be tested and told "oh it must be the MG" almost like before we are DXed and told it is in our head. I hope it doesn't come back.

Hi. I'm also in radio. Well at least for one more day. Am quitting because I just never know when my speech will be affected. I take Mestinon 60 mgs three timnes a day and a slow release version at bedtime. Most of the time my speech remains in tact. But the stress adds to my MG exhaustion. I also DJ for weddings and that will have to stop as well. My breathing is also very affected. So I'm just trying to deal with all of this. Was offically diagnosed in September. Was hosptialized then and againa couple of weeks ago for a few days. IVIG to help get rid of those bad antibodies. I understand your frustration adn terror. No one knows better than me how scary this is for someone who talks for a living.

Hey Ellen,

Do you find that your speech is affected in the morning too? I wake up and my speech is BAD! :(

Nicky

Ellen,
I pray that things get better for you. I have been doing well since the episode, so hopefully it is over! Take care and hope the IVIG works well for you.
Simon

speech problems
 

Hi Nicky,
I never know when my speech will be become affected. I had a bout with speech a few years ago, before my MG diagnosis. I also have Lupus or something in the Lupus family and the Docs thought it was from that. A lot of guessing with all fo this. But since my MG diagnosis and my taking mestinon, most of the time my speech is OK until I overuse my mouth or just get too tired. My talking for a living days are almost over. Then we'll see what comes next!

speech
 

Hi Simon,
I've worked for as long as I can rmeember. Been in radio for 34, 35 years. I'm not too sad that I stopped doing my show. Have a few more gigs to do between now and the end of January. Then we'll see. I hope your speech thing was just a once and done. But stay on top of it. I had a problem a few years ago. Went away. thought that part was under control. Then everything and more hit me in Septmeber. Working on controlling everything. Just want to enjoy my life now. Will be applying for Social Security Disability. We'll see what happens. Best of luck.
Ellen

Hey Ellen,

I forgot to welcome you to the group, so welcome!

Anyway, I know- the speech issues totally suck...I read some of your previous posts and I see that you're on Cellcept. How long have you been taking this? I know that it can take a while to kick in.

I'm on prednisone, and my speech is STILL bad. I'm going for a plasma exchange tomorrow as things are spreading to my breathing...I'm also supposed to be starting Imuran soon too but I havne't gone for the preliminary blood tests yet 'cause I haven't been feeling so great...Too tired...

By the way, I also have something like Lupus too...I have the arthritis, and positive blood tests, but I don't have all of the other symptoms so it's not 'official.' It certainly sucks to have so many diseases, but what can you do, that's life:rolleyes: (bit mad at life right now, but it'll pass).

Talk to you soon! Feel free to talk about everything and anything...Sorry that some of your last posts were lost in the shuffle...It can happens sometimes! :)

:hug:Nicky

cellcept
 

Hi Nicky,

How did the plasma exhange go? Is this the first time for you? I haven't had Also taking a little prednisone but I'll be going off that soon. The breathing thing is what really gets to me. Can't exert myself without my breathing becoming labored. And the Lupus causes me to break out in an itchy rash. Makes me crazy. That's why I'm on Pred right now. My fulltime job now is just going from one Doctors office to another. Fun! I look foward to hearing from you. Again, I hope you're feeling great after the plasma exchange.

Ellen

Hi Ellen,

I totally relate...That's my full-time job too- going to docs. plus outpatient treatments...

The plasma exchange went really well...I started on Monday, and just had my second treatment today (5 in total)...They're really spreading them out, which I sorta like because I feel like the good effects might last longer this way...

I didn't have any bad reactions this time as I think that my bad reaction the last time was caused by having super low hemoglobin...The last month and a half, my hemoglobin shot way up to normal levels, so I am so relieved about that and generally feel better energy-wise, and heart-wise (the palpitations were the worst!). Each treatment has gone by really quickly too, and I don't need to use as many bottles of albumin all because my hemoglobin is at a normal level now...

Breathing problems are scary, that's for sure....My main area is the tongue...After I have an exchange, I don't have any episodes of tongue paralysis- that's the most irritating symptom for me. Makes it hard to eat, talk, even brush my teeth, spit, swallow...It's like having a big lump of lazy meat in my mouth that's attached....lol

Yeah, in terms of Lupus thing, my main area is the joint pain...I have had a rash in the past, but it only last a day or so...I do have a pimply rash on my scalp, but I don't think that it's from that...

How does the prednisone help with your rash? I don't take prednisone for the joint pain, but rather the MG...I don't have a diagnosis for the joint pain, but I have Lupus antibodies...Anyway, one of the first reliefs I got was the joint pain...Don't have it at all anymore....I do have some pain in my back, but that's from something else...

Anyway, hope to hear from you soon! Has the doc. ever considered a plasma exchange for you?

Nicky

Hi Nicky,
Glad to hear your plasma exchange went well. My Doc has mentioned that to me. So far haven't needed it I guess. Don't know for sure. I'm not sure how the pred helps me but it does. This course was needed because one of the Docs in the hosptial put me on Pred for a bronchial thing and took me off too fast. I think that cuased a flare of the Lupus rash. So I'm just taking 10 mgs a day and the rash is starting to calm down.

I worked last night. Tough gig but made it through. It has been snowing here all day. We have over a foot on the ground now and it's still coming down. We're not used to that amount of snow this early in the winter. It does look really pretty.

I hope you have a great Christmas (if you celebrate) and a great 2010!! I'm hosting a party on Xmas Eve which I do every year. I actually got married last year druing the party. We surprised everyone. No one had any idea!

Ellen

Hi Ellen,

That's great that it works so well for your Lupus rash at a somewhat lower dose. I guess prednisone works very well for Lupus-type problems since the disappearance of my joint pain was one of the main differences I noticed almost right away...On the other hand, it had sorta gotten a bit better in general just prior to my thymectomy...Who knows what worked, but something sure did...How is the prednisone helping with your MG, if at all? You mentioned that you got hit again in September; which areas are most affected now (and sorry about that, btw :().

We don't have too much snow here yet in Toronto...It's been coming down a touch, but only enough to paint the city a bit white- fades away by the next day...I hope that it snows a bit more for Christmas, just for that ambiance.:)

That's excellent that you had a gig...I hope that your Christmas is great too and that Santa or someone brings you an autoantibody action figure that really works (just kidding...if only it were that simple! lol)...That's so cool that you got married on Xmas eve- that'd be the best Christmas Eve ever! :D

Take care-- oh, by the way, you said that you were on Cellcept- how's it helping the MG? I guess you may have just started it and maybe it hasn't kicked in yet? Anyway, ttys!

Nicky

I am a teacher and have sometimes had the same problem--just couldn't get my mouth to work. It's called dysarthria and it can be a result of MG causing weakness in the tongue, jaw, etc. Sometimes talking more slowly and pausing a bit more can help. I have this sometimes coupled with shortness of breath and it's really embarrassing to be in front of a group of people having these sx--I can only imagine what it would be like to be on the radio! I don't know what to suggest, except what I said above. I would assume that maybe making sure you don't eat anything that's hard to chew and perhaps resting and not talking for a while before you go on the air would help. The fact that you haven't had it much since that one time is probably a good sign. Perhaps you were just really tired that day. I do hope it doesn't occur again for you.

Hi there! Right before I was diagnosed I was having trouble with speech and swallowing...I would have to really concentrate on what I was saying and speak veeeerrrrrryyyy sssslllllooooowwwwlllllyyyyy....It was embarrassing to start drooling or for whatever liquid I was trying to drink to come out of my mouth as I was talking!! My doc told me that it is one of the signs that things could get a little ugly sooner than later (crisis). The next thing for me was the lovely gift and surprise of not being able to open my right eye...aaaahhhh...MG, the gift that keeps on giving ;) How are you doing now?

I have only had two brief, 5 minute, episodes. I am thankful and am just hoping and praying for no more extended problems. Thanks so much for your comments. They are appreciated.
Simon