At A Loss

[sadmanman]

Hello everyone

I'd like to start off and say I don't think I have ALS (anymore)

I know that I have severe (health) anxiety, OCD, and depression.

I started out like so many other people who got BFS and was worried about the twitching all over the place.

This was about a year ago that I first started with the twitches. I was positive I had ALS

I got an EMG and was reassured that the twitches were benign.

After that, I started to think I had every secondary symptom. I'd drop my keys once and think my fingers were getting weak.

I'd wake up and feel unsteady walking and think my legs were getting weak.

Finally after about 6 more months of thinking random things were going wrong with me, I got another emg on the opposite side of my body (first time was right side, second time was left side) and it was normal. I fully understood that if I had ALS it WOULD have showed on this EMG.

The very next day the thought hit me that he didn't check my tongue/scm, and that if I had bulbar onset it wouldn't necessarily have shown up. Within that same week I started "feeling" like my tongue wasn't fitting inside my mouth, and that I wasn't enunciating my words properly. I went to my PCP saying I didn't feel like I could talk right and he told me I sounded perfectly normal to him (as did everybody else around me)

He said I could to to a SLP if I wanted to, and wrote me a script to see one but I didn't take it as I really couldn't afford to keep going to specialists.

I waited another month and a half ish, and went back to my PCP and he said I still sounded the exact same.

It has now been almost 6 months of me being convinced I'm not speaking properly. From everybody I've read EVER, ANYWHERE, even for the slowest progressing people, I've never heard of someone noticing their speech problems before anybody else could tell for even a month. Everything I've read leads me to believe, at this point, I do not have ALS.

Everything I've said above, combined with the fact that I'm only 27, and that on the aboutbfs website and on the nomorepanic website (I've been lurking here and both of those since I started twitching) it seems to be a common thing to perceive speech problems while you're fearing bulbar. at no point has anybody ever told me anything was wrong with the way I talk.

I refuse to take meds.

All I want is to feel like I can speak again. I haven't been able to open my mouth for the past 6 months without thinking "Is this going to sound normal to me???" Before my words even come out.

There are some other things with my mouth that bother me, like biting my tongue and mouth and choking on water, but those all conveniently only seem to happen when I'm thinking about them and am worried about them.

I think it's the same with my speech, but the difference is that I'm always thinking about it.

I don't know where else to turn. You guys have all kinds of anxiety ridden people in and out of here all the time, as well as people with weird symptoms that just aren't ALS. And you tend to be older due to the nature of this disease.

For how strongly I am opposed to meds, my psychologist has helped me deal with the brain i was given quite well.

I won't lie and say I don't still fear that I have ALS from time to time, or that I don't look at my tongue in the mirror every time I pass one from my OCD (or sometimes seek out a mirror to check it)

Everything else has passed though. I'll get a muscle cramp and think "oh here we go. The cramps are gonna keep coming and I'll get weak" but that thought will fade as soon as the cramp goes away and I'll never think about it again. I'll drop something and think "that's it for the hands" but only in that moment.

The only thing that has stayed is my feeling of not being able to talk. I don't know what to do and no suggestions have worked so far. I talk so much less now because I hate it. I feel as if I can't POSSIBLY be sounding normal to other people but I do

I have been recording myself every day for about 103 days I think and when listening, I can confirm that there is No difference.

The feeling of not being able to talk has taken various forms in the last half year, but the one constant has been that I don't think I enunciate sentences with repeated "t" and "d" sounds enough and I seem to stumble those sentences.

I'm sure you're thinking "well that doesn't sound like an ALS problem silly"

And I'm thinking that too. I just literally don't know where else to turn because I want it to go away and it won't so far.
Thank you

 

[lgelb]

If I am reading correctly, you could maybe benefit from working with a SLP but can't afford one. So why not call whatever speech clinics, especially academic ones, are in your area, and ask if they have any pro bono/sliding scale patients? Or if they can do a payment plan, or a free evaluation? Often they can give you exercises to work on without your having to go there a ton.

Meanwhile, the "t's" and "d's" may improve with Biotene or other moisturizing spray (even saline sometimes helps), cough drops, drinking more liquids, taking your time with speech, swallowing before you speak, etc. And of course, you know that anxiety dries you out, so it's worth addressing.

I'm happy to hear that you know this isn't ALS and are ready to work on making your life better knowing that. Be persistent and you will find people willing to help you wherever you are on that journey.

Best,
Laurie

 

[GregK]

I second what Laurie said.

However, please be aware that we do ALS.
We don't do health anxiety. And we most definitely don't play the " What do you think it is? " game.
It's more than enough to worry about ALS patients...

So : good luck, and good bye.