Speaking: the s

[Antologia]

I have been on this forum in 2013 and january 2014. After my first EMG in hands, feet, arms and legs, which was fine, I tried to avoid this forum and go on with my life.

The neuro said it was 95% clear it was not ALS, she thought it was BFS but she said she couldn't diagnose that for sure.

I have random twitches since May 2013, never stopped since. Also increased saliva since okt 2013 and random pins & needles since nov 2013.

Since february 2014 I've been experiencing some changes in my speech. When I say the "s" and the "t", z and d. My husband doesn't notice this, he says. When I see my tongue when I say the "s", I can see that my tongue doesn't close to my teeth at the right side. So when I say the "s", air is coming through a hole at the right side. My husband sees this too. The left side doesn't have that hole.

So now I'm worried again....

I have a follow-up neuro appointment in June.

Is this something that sounds familiar in ALS? Anyone else who had this?

 

[Kosmoskatten]

I am not sure what you mean by "a hole" and that your tongue "does not close". But I am interpreting it as if your teeth/your occlusion does not close the same way on your right side and your left side.

If you feel your speech has changed and your occlusion might have as well you should see a dentist, since occlusion changes could make up for perceived or real changes in your speech.

Otherwise contact your neurologist, they are trained to hear changes in speech due to neurological conditions.

 

[Antologia]

Hello Kosmoskatten,

It's not my teeth that have a hole, it's my tongue that is different on the right side. I can only see it while saying the "s" if I look in my mouth. I see my tongue is touching my front teeth on the left side but not on the right side. Hard to explain. If I talk, I can hear the air alight on the right side. This gives a kind of partially sound, but my husband doesn't hear it when I tell him. I do hear it and feel it, air is escaping on the right side of my mouth, not on the left side. And not on the sides, it is up front at the right side.

Of course I will mention the neuro this, but I don't want to contact her earlier then our appointment in June if this is not related to ALS. I'm just wondering if someone here has the same...

My EMG was not in my tongue, only in hands, feet, legs and arms. Twitches are everywhere. Normally, if you have twitches in arms and legs, I think an EMG should be dirty if the cause would be ALS. But I'm not 100% sure if that is true. The neuro ruled out ALS for 95% she said. So there still are 5%.... well, you know what I mean.

 

[affected]

Either see a doctor or dentist, or wait until June, it's not far away in the big scheme of things.

If it is bulbar symptoms they will have persisted and become worse by June.

Really you are obsessing and looking for progression and convincing yourself that you are finding it. Let me tell you clearly - progression is not something you 'wonder' if you are experiencing, it is obvious both to yourself and everyone you contact.

Please stop expecting those who are living with this to continually soothe you, get professional help and true answers to what is going on with you.

I'm sorry you are having health issues and hope your doctor sorts it all out with you

 

[Antologia]

Hi Tillie,

I understand what you are saying.

My husband doesn't hear the speaking-difference, but he sees that my tongue is a bit awry to the right when I say the "s". I also have "shivering" in my tongue when it's at rest in my mouth, which other people see too. I do partially a little when I say the "s" and the "t", because air is escaping through this hole I have on the right side at my tongue. I also have increase of saliva, which makes me spit sometimes when I talk.

I will bring it up at my neuro appointment in June and will wait and try not to worry in the meantime

 

[affected]

We had many months of speech changes and swallowing water issues before we even began to think doctors, and even then we just kept on living life to the fullest.

We went through many months of all kinds of stuff, and towards the end my husband was convinced in his heart it was ALS, I was not, I was the strong one holding denial. Still we kept living life to the fullest.

I'm so glad now, because once we suddenly (after months of all those different types of doctors and looking for an answer, which I was sure was some odd nerve thing coming from teeth, yet the diagnosed seemed sudden) had a diagnosed and then life began to change on us and he began to progress rapidly into his limbs and is now approaching the end stages only 11 months later.

So live, enjoy, love, laugh, and wait til June. You can't do anything to cure ALS, so try to put it aside and just document any true progression to discuss in June.

I would now hate to think I obsessed about this, or he did, and that we didn't get to enjoy all that time.

 

[next coca cola girl]

My speech was my first symptom. In Oct 2012 I noticed that my speech sounded like I had a sinus infection. By Feb my co-workers thought I was on drugs or drinking. From that time on my speech is difficult. B,D,S,P,K were all hard to sound out. Now it's been a year and most people can't understand me, some can. I now use a boogie board to communicate. I text for most of my calls. It's very frustrating and so much for conversation. It's really hard for my husband and grandkids to understand me. I've learned to be a listener which was one of my faults lol. I think what I miss the most I'd singing along with the radio. I listen to Positive Life Radio it's comforting and inspirational. My motto live till I die. Next coca cola girl

 

[dalvin]

Next coca cola girl, if your still able to text message pretty good you might benefit from a type to speak app. I'm using Assistive express but there are others out there two. I use an iPad but I know that they work on smart phones as well. Makes it a lot easier to be understood and as you know there are times when it's really important for others to understand you.

 

[affected]

and with IOS7 the iPad is now fully switch compatible, so as your hands deteriorate you can move to the switch to use any text to speech app

 

[next coca cola girl]

Thank you I have a Samsung mini I've tried the text to speech sounds like a robot and hard to get the right pitch and speed for my husband who has hearing aids. So far I can write on the boogie board but have a terrible time with pen and paper also my signature is totally different.I'm so glad I've been getting responses very comforting.

 

[dalvin]

One thing I've learned on the type to speech program I use. That is to make sure I use commas and periods. If I don't it will run everything together but with the punctuation marks it pauses where you it to. As for speed, my app has a setting where I can slow it down to the speed I want. Don't know if all of them do or not. I actually have 2 apps. One is very much like you described for the voice so I don't use it much, the other I like very much

 

[affected]

yes punctuation is really important to get a good flow

also ours has a user dictionary where you can put in punctuation which helps a lot too

 

[next coca cola girl]

You mentioned you have one like mine but what is the other one you do like?

 

[dalvin]

The one I like is Assistive express. Cost was $25. Has three voices to choose from, all are clear sounding, has capability to preprogrammed frequently used phrases. Just be sure to use punctuation. You can go into the settings and tell it how fast to speak and when to speak,ie, after each word or only when you hit the speak button. Also has word prompts so once you start typing a word a group of words will pop up to chose from, if it's not there just keep typing and it will bring different ones up. If you see the one your wanting just touch it and you don't have to keep typing. Handy for those of us with spelling issues

 

[next coca cola girl]

Thank you and its this for the phone or a separate device?