ALS fear- now has moved to BULBAR onset - will this hell ever end?

[Lilly13]

omg, if it isn't one thing it is another. I am so sick of myself... I feel as if I am living in health anxiety hell... anxiety has made my life hell. My boyfriend said that he wished he could just kill the anxiety monster who haunts me and I wish the same thing... everyday...

The bulbar fear started when I was on an airplane, I stuck out my tongue to ensure that the scallop tongue that I have was not progressing and there it was I saw little quick ripple movements in the middle of my tongue. I don't know if it was the lighting or maybe the movement of the airplane but it looked stranger than usual, I was convinced that this was ALS tongue twitching... but when I look at my boyfriend's tongue his kind of ripples when out as well.. idn if what I saw was sinister or not... my memory is blurred...with panic and fear...now I am OBSESSED with ensuring that I am not slurring my speech... I don't even want to talk anymore... because I am SO scared. Last night my boyfriend and I had a housewarming and I got VERY drunk,.. and I guess I said the word "Jar" like "Jaw" and my friend and boyfriend made fun of me and pointed it out... this started a panic. I know logically I was drunk but I can't fight the feeling that I am slurring... I am VERY aware of my tongue now, I notice every time it catches on my teeth and how much saliva I am producing..

I need support, I am sick of taking out my anxiety on my boyfriend... I know it is eating him up inside as it is eating me up... I debated going to the hospital..


I have a neurologist appointment on friday and all I can think is that he is going to look in my mouth and tell me I have ALS tongue twitching...

Please help me...

[Sassystacey123]

I have had the exact same fear!!

I also had little ripples and pulls on my tongue, and convinced that I had bulbar onset. I was so concentrated on my tongue and fixated on my speaking that I slurred my speech also. Actually my colleagues noticed it as well, but it was all in my head!

I caused those things to happen, such is the power of the brain.

This was over a year ago and since my health anxiety has moved onto other worries, guess what - no more slurring or rippling tongue!

Also wanted to add I got in such a tiz, I made my sister stick her tongue out and it rippled just as you described yours doing..

You are fine, see the neurologist Friday and let what he says reassure you xx

[popejoan]

Those are normal tongue movements. Bulbar onset ALS always starts with slurred speech but it's not like once I couldn't pronounce one word but now I can. Once you can't pronounce a letter that's it, you can't pronounce it again. Go like papapa, sasasasa, chachacha, the letter 's' is the hardest one to pronounce for ALS patients. And slurred speech in ALS is really really significant. If you can move your tongue quickly from side to side and if you can stick it out and it quickly you have nothing to worry about. I've been there too but I now think that how silly I was that I spent hours checking my tongue.

[Fishmanpa]

Hi Lilly,

I can understand how you and those around you must be exhausted. To be consumed with fear and worry takes a toll on all involved. I saw you post about meds. Have you pursued that or spoken to your doctor about therapy?

The bottom line is you have to take responsibility and treat this. It's not an overnight thing and takes time and effort but just like any other illness, you can heal with the right course of treatment. You have to at least start. One step forward and two steps back is better than taking no steps at all.

Positive thoughts

[Lilly13]

Heyy fishermanpa,

I will be starting Zoloft tomorrow, hopefully things work out okay and that will help.
I am losing my life to anxiety and OCd and I need to get the power back...

Wow thats wild that it is possible to slurr your speech from anxiety but possibly because we are so nervous when speaking, I tend to screw up my words when I'm nervous.

Joan, its crazy that tongues normally do that... It looks scary. Your input always really helps. I did the excercise you told me to with success. Although repeating words is becoming a compulsion.

I am trying to be calm and enjoy the love of my life and our new home. I have to savor today.

Thanks everyone,

I love you guys!!!

Xx

[Serenity1990]

I recall something that was written for the aboutbfs site by (who is apparently deemed to be) the leading ALS specialist in Europe.

He says that in all his years of practice he has never seen a case of bulbar onset ALS. That's how rare it is.

Couple that to the fact it's an incredibly rare disease to begin with and I think we can conclude you have nothing at all to worry about.

Twitches are nearly always benign in origin.