Bulbar als

[LE]

I'm mad at myself for posting this as I have been able to self soothe for a few weeks now. I just need to hear rational responses.

I have been worrying about als for months. In particular bulbar. I have noticed changes.

1. My speech seems worsening terms of when I am trying to say words in a sentence they don't come out right. When I re-say it, it's fine.

2. When I used to stick my tongue out it stayed still now it is quivering when I stick it out. At rest it's fine. Why has this changed tho?

3. The sides are scalloped but look like they have lost bits of skin from the tongue.

4. When I move my tongue from side to side or tense it up it doesn't feel as strong.

I have seen Neuro already. I requested a second opinion but have no appointment through as yet.

I genuinely think I have this.

[Ben1989]

And what did the neuro say and do? It's important you detail your appointment

1) Bulbar is a sense of when you can't say a word, you can't say it again. ALS are permanent changes. So, I highly doubt this is attributed to bulbar and more to your anxiety towards it. Let me guess, you concentrate so much on your tongue now? I do too, as I too have a bulbar fear at the moment

2) Sticking your tongue out has many 'methods'. Ask a friend, gf/bf to do the same and compare. Typically, it will quiver. You say that it 'never' did. Nobody would know if it 'never did' unless you've been worrying for some time which I guess you have been?

3) Skin has nothing to do with ALS. If you mean mass, then the damage would have been done by this point and I suspect you would have noticed significant speech changes - which you haven't

4) Define this in more detail.

[Kuatir]

Answer this question:

Can anxiety cause any of these issues and how would they be caused?

There is plenty of info on this website that will help you answer the question if you are not sure.

[LE]

And what did the neuro say and do? It's important you detail your appointment

1) Bulbar is a sense of when you can't say a word, you can't say it again. ALS are permanent changes. So, I highly doubt this is attributed to bulbar and more to your anxiety towards it. Let me guess, you concentrate so much on your tongue now? I do too, as I too have a bulbar fear at the moment

2) Sticking your tongue out has many 'methods'. Ask a friend, gf/bf to do the same and compare. Typically, it will quiver. You say that it 'never' did. Nobody would know if it 'never did' unless you've been worrying for some time which I guess you have been?

3) Skin has nothing to do with ALS. If you mean mass, then the damage would have been done by this point and I suspect you would have noticed significant speech changes - which you haven't

4) Define this in more detail.

Hi Ben

I have been worrying about this since nov 16. I would stick my tongue out in the mirror then and it didn't quiver. Now it does.

I seen neurologist 4 times. Last app end dec. He examined tongue and stated no fascs, no wastage and no weakness. But I think it's changed now.

I had emg and nerve test jan17. Told normal. Both legs, right arm and right hand. I requested a second opinion via my gp. The Neuro I saw is a general Neuro who specialises in MS. He did say he has worked with many mnd patients over the years. The Neuro who conducted the emg said he unfortunately diagnoses als weekly and that I did not have it. But then my bulbar region wasn't tested.

On the last point I just mean like when I tense my calf for example I can feel it tense. My tongue does tense too but I just don't think that feels as tight.

---------- Post added at 10:41 ---------- Previous post was at 10:40 ----------

Answer this question:

Can anxiety cause any of these issues and how would they be caused?

There is plenty of info on this website that will help you answer the question if you are not sure.

Thanks. I don't know if anxiety can cause these changes in my tongue tho?

[Kuatir]

Your tongue is a muscle. So anxiety can affect it in the same way it can affect any muscle.

Sent from my F8331 using Tapatalk

[Colicab85]

It's incredibly likely that there are no changes to your tongue at all. Just your anxiety is making you think there is.

You have been told by multiple individuals who know a LOT more about ALS than you, and everyone else here, that you don't have ALS. You really should believe them.

Getting a second opinion is pointless imo, they will tell you you don't have ALS but that won't make any difference to your anxiety. You will be checked out and your anxiety will immediately change the focus of your worries to a different part of your body that "looks different than before"

The path to beating this is acceptance that you have anxiety, its fairly obvious, and then trying to beat that, as opposed to continuously chasing a non existent diagnosis.

[Ben1989]

Hi Ben

I have been worrying about this since nov 16. I would stick my tongue out in the mirror then and it didn't quiver. Now it does.

I seen neurologist 4 times. Last app end dec. He examined tongue and stated no fascs, no wastage and no weakness. But I think it's changed now.

Great news. Perfect.

I had emg and nerve test jan17. Told normal. Both legs, right arm and right hand. I requested a second opinion via my gp. The Neuro I saw is a general Neuro who specialises in MS. He did say he has worked with many mnd patients over the years. The Neuro who conducted the emg said he unfortunately diagnoses als weekly and that I did not have it. But then my bulbar region wasn't tested.

Your bulbar region doesn't necessarily need to be tested to discover ALS. Did you think that you had limb ALS, told you don't, then coincidently developed bulbar ALS?

On the last point I just mean like when I tense my calf for example I can feel it tense. My tongue does tense too but I just don't think that feels as tight.

You cannot use this as a self-diagnoses. This is nothing. If it wasn't 'tensing' as 'tightly' as you say your speech would be severely affected. You're making this up in your head.


You need to trust our neurologists. You said you question his opinion yet also said he diagnoses a weekly ALS patient. So, he does know what he's doing. You need to put faith in them.

Also, ask yourself, when will you truly be happy to know that you don't have ALS? How many neurologists will it take? How many tests will it take?

[Fishmanpa]

I genuinely think I have this.

As I told Ben.. YOU think you have this. Several visits to a trained medical professional and scientific medical testing does not, no one here thinks so either yet YOU choose to believe you do. Best plan of action would be to go to a hospital that specializes in MNDs and discuss testing, treatment and prognosis.

Good luck and as always...

Positive thoughts

[Colicab85]

Also, ask yourself, when will you truly be happy to know that you don't have ALS? How many neurologists will it take? How many tests will it take?

This is a question I often think about when it comes to anxiety etc.

I know all about it, I've been there. Happy to say I'm very close to being out the other side now.

But its often as if we won't be happy until someone validates your fears? Until someone actually tells you you have the thing you fear.

Think about how absurd this all seems? Multiple EXPERTS have said you have have ALS but yet you don't believe them? Why?

I know its the big question when it comes to health anxiety but truthfully, with all evidence pointing to the fact that you're fine, its as if you are actively choosing not to believe them? Whats the point in going and asking if you're going to ignore their advice?

[LE]

The second opinion is being requested for a neuromuscular specialist Neuro. I have no idea when the app will be.

My mouth is so dry and my toungue catches all thes time when speaking. I've even bought saliva sweets and it's making no difference. I now have burning tongue.