Frustrated

[Issi]

I am at a mess right now because of my speech issue, noticed it 4 weeks ago when I was talking a lot my “s” sounded different. I definitely have problems with certain letters like “s” or “z”. Swallowing is ok so far (just Globus sensation which might come from GERD). But the muscles of my face – esp. left side – as well as of my jaw bone and my throught and neck are really tensed. Tend to make grimaces just to loosen them a little bit. But what scares me most is my tongue, seems to be less dynamic and it feels heavy in my mouth. Have a strange weak feeling in my complete mouth and it`s hard work to speak clearly. No slurred speech right now but some words are really hard to say.
Trembling has improved a little bit but left hand and right leg still feel tight and weak from time to time. Pain is mainly present in my hands, arms, shoulders and joints and today even along my ribs.
Had two EMG`s in limbs in early January and by the end of February which were clean.
Wondering what to do now, can`t go on like this, another examination and EMG in tongue ?

Issi

[Yuliasir]

Hi Issy
how is your overall neck conditions? (I just can not reacall at the moment if you have any complains for that). The fact that you have some rather unilateral muscle tension might point to the neck issues.

I also remember that SuzyQ, who seems to work in neurology (again if I do recall correctly) said that any bulbar issues she had seen in her practice never were limited to the specific sounds but rather affect the whole ability to speak.
I also remember that many people here have complained for diffcult speaking, mouth numbness ('Fat tongue' is one of the common stress symptomes), etc. in certain stage of their BFS way.

I personally just recently experienced some stunning in the middle of the easiest words, and I still have some bad days when I feel like it is hard to speak and my lips are tired etc. I also consider that it is harder for me now to pronounce R-words, but I had to learn how to pronounce it correctly when I was 10 (so it is not my favourite sound anyway, and i just become more concentrated on my old speech defect in those days of BFS). I mean may it be that you had some problems with those sounds before (even being a small child) and had to learn correct pronunciation? If so, they might be the first thing wich your body decide to sacrifice in terms of release some muscle pressure caused by BFS and related stresses.

I also had rib and waist pains, few years ago - very umpleasant and spasmatic. They are gone now almost 100%.

By the way - do you take any antinaxiety meds? Or maybe someting like Gabapentine/pregabaline (Lyrica) for twitches? Those are well known for causing slight dysartria as a side effect.

[Issi]

Hi Yuliasir,

Thanks for your comment. My neck pain is not constant but today it`s worse and I have the feeling that my throat muscles are tensed overall. It can be felt on the bottom of my tongue and it goes down from my chin over my complete throat, very strange and my jaw muscles feel very tight. I have never had any speech issues before not even as a child. It`s almost like lisping so I mean that at least the tip of my tongue might be weaker. Due to that tension everything feels slower in a way.
Right now I take Citalopram might also have a little impact. But I noticed that speaking feels harder even before I took it.
Twitches are not so bad so I don`t take any meds for those. I don`t actually have hotspots just a few twitches here and there.

Issi

[Yuliasir]

For me on your description it looks like a real muscle tension wich might be caused by many reasons (and most of them are related to the continous tension in the neck and upper part of the back). And tension by no means is not a palsy (wich is generally lack of muscle tonus), seems like you rather have certain hyper-tonus (or feel like that). Extra tonus usually (if I do not mess my non-systematic medical knowledge) happens in case of hyperreflex conditions (and many of us here are hyper-reflective without any bad long term consequences) and in cases of viral meningial infections (wich are rare itself and I am sure you would not be able to write here having prominent meningitis with neurological signs).

What is your experience in massage of upper back and collar zone? have you tried this in order to relief tension?

I would suggest first clear this with a physio therapist, and maybe check what is your neck blood circulation... but I am far away and not a doc, just an semi-aged lady witha bits of knowledge taken here htere everywhere from my jobs )))
Actually many of members of this board had also tongue ENMG (I can imagine how bloody painful it is), and this was only to see that their tongue is OK... but still twithcing or 'fat' or slow etc.


Generally what you say about prevailing pains and not twitches suggests maybe constant postural tension and/or circulatory issues rather than any MND... however I would like to say circulatory issues, if any, are not something 100% sweet and harmless, so it is worth to check if your brain receives enough blood to control your body.

Wish you get beter soon!

[Jujulia]

Hi Issi,

I know perfectly well what you're talking about because I have the exact same problem (take a look at my recent posts!): face/neck muscles tense (or even sore sometimes), tongue tiredness at rest or after speaking/eating, throat discomfort/soreness whether I'm swallowing or not, speaking issues (especially certain letters, like you), etc. When I do specific grimaces on purpose (self-testing) my chest/neck muscles will shake badly... what the heck is that?

The only positive thing here is that I remember having a similar problem before Christmas, which means that this crap waxes and wanes (which is a good sign, I suppose)... Anyway, I realize I'm not helping you a lot, but at least you know that you're not alone with this problem.

[Issi]

Hello Jujulia,

It is a real help for me just to hear that I am not alone with this problem and your statement that this might go away is a hope for me anyway. I can`t do more right now as to relax and try not to notice it too much but this is better said than done. Everybody near me tells me that my speech sounds ok but for me it`s hard work to speak clearly. Sometimes it feels as if my face is frozen and I have to move it all the time to get it a little more flexible. It`s hard to describe but I think you understand quite well what I mean.

Let us keep in touch

Bye for now
Issi

[johnnythejet]

Everybody near me tells me that my speech sounds ok but for me it`s hard work to speak clearly. Sometimes it feels as if my face is frozen and I have to move it all the time to get it a little more flexible. It`s hard to describe but I think you understand quite well what I mean.

What you have just described I have experienced EXACTLY and has been reported by many, many over the years. This is standard stuff for worried twitchers and is completely unrelated to the disease you fear. I know its hard to relax and put it out of your mind, but time and truth is on your side here. It will get better, I promise!

[Snoookie]

Hi , me too, i mention in my 1st post the speech thing jaw feels stiff throat and tongue tense....i also have tongue twitching to go with it......have app in mid July with neuro seems to far away......

[cesarin]

Hello, greetings to all in this community, who has revived hopes.

I twitcher 7 or 8 years ago or so, but recently more exactly in June, I started having trouble speaking specifically with the letter "S", since that time, I started to worry, talk with DR. google. and guess what I found ** S,.

Wanted to know what you have done with the subject, as in what little I understand of English, is that more people have felt.

Attentive to your answers cordially

Hola, saludos a todos en esta comunidad, que me ha revivido las esperanzas.

Soy twitcher hace 7 o 8 años aproximadamente, pero recientemente mas exactamente en junio, comence a tener problemas al hablar especificamente con la letra "S", desde esa fecha, me comence a preocupar, consulte al DR. google. y adivinen que encontre **S,.

Queria saber como les ha ido a ustedes con el tema, pues en lo poco que entiendo de ingles, se que mas personas lo han sentido.

Atento a sus respuestas cordialmente,