Scared Silly

[scaredsilly88]

Hi everyone-
I'm so sorry for the message but I don't know where to go to ask. I feel like I have read so much about bulbar ALS that my brain cannot possibly filter it all, some of which may be misinformation.

This is my story:
I'm 27 years old and I am terrified that I have bulbar ALS.
Beginning in September of '09 (making that 27 months ago and counting) I started feeling like I couldn't talk correctly. It just felt like I was having to force words to come out correctly...especially if the word had an 'S' sound. Now, I've always had a slight lisp but it felt like it was becoming exaggerated. When I typed in this symptom, bulbar ALS is what I found. I went to my primary care dr, and then to a neurologist followed by an EMG, followed by another neurologist, followed by a tongue EMG, and here I am 27 months later with the same problem. This speech problem hasn't progressed..but it's constant. From the time I wake up to the time I go to bed, I feel like I'm working to enunciate correctly. Swallowing isn't much of an issue. Occasionally I'll have difficulty swallowing something but I'm just worried about the speech.
I can say confidently that I do not slur my words, i just have the subjective feeling of speech difficulty (all day every day).
After 27 months, should I still be sitting here terrified that I have bulbar ALS? I have no weakness in my arms/legs and my tongue isn't atrophied.
My neurologist(s) think it's just anxiety but it doesn't feel like it is.

Someone help! :-(
I just need some information on this.

 

[brooksea]

After 27 months, should I still be sitting here terrified that I have bulbar ALS?

No. Trust your neuro. Sounds like plain and simple anxiety. Seek help for your anxiety and you will be fine!

If you had bulbar symptoms after 27 months, you would be quite difficult to understand. Lisping is not a symptom! Google is not the one you should seek a diagnosis from........ lisping...that's a knew one on me!

 

[TedH5]

You do not have ALS. I have to say you have your name backwards. It should be silly and scared. Seriously in telling us of your history over the last 27 months you left out the obvious part that each Dr found nothing wrong and your EMG results were normal.

You readily admit you have no weakness and no real swallowing issues. It honestly sounds like just a lisp and there is no shame in that. Heck Lou Holtz the Championship winning football coach sounds worse then sylvester the cat and he is on TV every weekend.

Feel free to put ALS out of your mind because based on what you have said it is clear that you do not have this rare disease.

Good luck to you!

 

[scaredsilly88]

Thank you soooo much for your reply. You really did reassure me. (of course I'll be scared again soon but at the moment, I feel better).

3 different neurologists have told me that I am fine but the feeling of difficulty with my speech will not go away and I want it to sooo bad. Then I get the occasional tongue twitch that throws me into a complete and utter panic. Maybe I really am anxious and paying too much attention to a lisp that has always been there.

After over 2 years, a neurologist would be able to diagnose me if I did have it, right?

My grandma actually had ALS (limb onset) and it is a terrible, terrible disease. My prayers go out to those who have been diagnosed.

 

[Alyoop]

Yes, they could diagnose you. Your grandma with ALS is probably the cause of your anxiety about your speech. Be assured you will not have bulbar ALS, you would have major progression in so many months and it would be obvious to your neurologist.

 

[TedH5]

I think the fact that your Grandmother had ALS explains a lot. It is the source of your health anxiety. I am sorry you lost your Grandmother to this disease but I stand by my original statement, from what you have described in your firat two posts it is evident you do not have ALS. Trust your Dr's and deal with your health anxiety.

Good luck!

 

[scaredsilly88]

Thank you guys so much. I appreciate it soo much.

 

[RandyJ]

Expect the worst.

And you should go to a psychiatrist and talk to him about the fear/anxiety you have. Some medications make those feelings numb.

Sorry for my poor English.

 

[trfogey]

Expect the worst.

That's an odd bit of advice to give someone who is, by all medical accounts and indications, perfectly fine. What do you mean by that?

 

[scaredsilly88]

I am definitely half terrified but also half confused by that statement. I hope it was just poor english and he didn't mean to say that ..lol.

 

[Alyoop]

If you ever want to check other posts from a person, just click on their name, then click on previous posts. It will give you a better indication of the sanity of the poster. Randy is a twitcher, says it all really

 

[HelenL]

Consider going to a speech therapist to see if they can help you work those muscles properly that you feel aren't... 2 of my kids saw a speech therapist when they were little, and improved greatly.

 

[scaredsilly88]

Thanks for the suggestion. I'm actually going to do that. I already called and made an appointment. Thanks!