Very concerned about possible Bulbar

[Atsugi]

Xanax? Was a doctor involved? No need to answer, really.

I know you're scared and don't know what to do about this. But we--who know ALS pretty well--have told you that you have no reason to be thinking about ALS. Every minute you're on this website is a minute that you are not solving your problem. See your GP medical doctor.

 

[RLMunster]

No. no doctors involved. I took 2 xanax pills that my mother had because she's being treated for anxiety. I know it's an addictive drug and I won't take it again without medical advice.
One thing I noticed now is that my tongue yesterday afternoon was a lot slower when moving side to side, by night it was fast again and today remains fast, which makes me wonder that's why I slur, because my tongue sometimes gets slower. It didn't get weak though, I can move it all directions and push cheeks strong, but yesterday afternoon it was definitely slower. I know in the beggining of bulbar ALS slurring can come and go, so I'm even more worried now, because I noticed my tongue was much slower yesterday afternoon.

 

[preacherman]

The thing is, I know I'm not imagining my symptoms, I'm pretty sure they're real.

As WendyWooG replied, 'no one is saying that your symptoms are imagined or not real';

And as Atsugi said, 'I think it's not a good idea to answer. Some people subconsciously "get" the symptoms they hear about'.

These symptoms are, or can be, very real.
That does not mean that they are not a product of our fears.

A psychosomatic illness is very real; the symptoms are very real; they are not 'made up'.
But they are a product of our stresses and our fears.

Our body reacts to physical stresses and pain in very overt and obvious ways.

Our mind reacts to stress, emotional pain, and information overloads in sometimes very mysterious ways.

When we hit our thumb, a nerve sends the signal to our brain and we instantly feel the pain. Our body then reacts with whatever reaction we may have, such as shaking it, squeezing it, ...whatever we do to try to alleviate the pain.
Then, the pain fades.

Was it our reaction that made the pain fade?
No, probably not.
It was our mind believing that whatever we are doing is making a difference and our mind is soothing the pain.

Does that mean the pain was not real in the first place?
Of course it was real; but all that the pain was in the first place was a signal to our brain that said that it should hurt.
Once we convince our brain that it should feel better.... so we do, even though there is no real reason that it should.

We believe that we are getting some terrible disease.
Our stress rises.
Soon we are noticing every little symptom and our brain starts to believe that they are indicating to us that our fears are real... thus increasing whatever symptom is bothering us, feeding the stress.

Are your symptoms real?
Of course they are.

Are they ALS?
You have been assured by many knowledgeable people, including your doctor, that they are not.

Earlier you mentioned an EMG... By all means, if they are willing and if it will give you peace of mind.

 

[RLMunster]

Thanks for the replies guys I was almost letting go of this fear until I noticed my tongue was very much slower yesterday (I could move it every direction but if I tried to move it side to side it was definitely a lot slower than it is today)
I'm worrying this means there is damage to the nerves that control the tongue but it's very early and it's not permanent damage yet.

I will try to calm down, I know the odds of having bulbar ALS at 20 are incredibly low, like 1 in a million or less but still statistics mean nothing when you are a part of them.... (I remember a few years ago I had a strange reaction to a medication that doctors said was unbelievable rare, like 0,00001% so I know rare very well )

 

[preacherman]

I will try to calm down, I know the odds of having bulbar ALS at 20 are incredibly low, like 1 in a million or less but still statistics mean nothing when you are a part of them.... (I remember a few years ago I had a strange reaction to a medication that doctors said was unbelievable rare, like 0,00001% so I know rare very well )

So you have had a reaction that you had a 0,00001% chance of, and now you believe that you may have a problem that you have a '1 in a million' chance of...

What does that put your odds at of having both? say 1 in what... ten trillion?

Sorry, I know that is probably not a good collation but....

 

[RLMunster]

The reason why I'm mostly worried is because in Bulbar onset ALS the muscles that are affected first are the tongue and swallowing muscles, so (correct me if I'm wrong) the reflexes\babinski and all that would be normal because those limbs are not affected yet. So yeah (again correct me if I'm wrong) a normal neuro exam does not guarantee I can't have early bulbar onset ALS

 

[preacherman]

I would agree that a normal neuro exam does not completely guarantee that you do not have early bulbar onset ALS; and nobody can really tell you that you absolutely do not have ALS except a neurologist, and then only after all of the applicable tests, and a lot of wait time to see if anything is progressing.

We can, however, say with a reasonable degree of certainty that we do not believe you have ALS; and that we believe that you should be looking somewhere else for the answers to your issues.

You can take that or leave it.
But if you are after absolutely 100 percent assurance then you could pursue the EMG... I suppose that even that has at least some margin of error, but it is probably as close as you will be able to get.

Better yet, though, would be to look for something different which would far more likely be the cause of your troubles.

If I see that my car is running rough I may think that the engine is going to blow up...
I take the car to the shop and tell them that I am afraid that my engine is going to blow up.
The mechanic looks at the car and says that it is really unlikely that your engine is going to blow up... we should start with something cheap and easy to fix, that is far more likely to be the problem... like the spark plugs, or perhaps the fuel filter.

All my acquaintances who know a little bit about cars tell me it is probably just the spark plugs, or perhaps the fuel filter.

No... I really think the engine is going to blow up... it can't be the spark plugs... that would be too simple... I think the mechanic just missed an important piece of information.... it must be going to blow up.

Well; maybe the trained, experienced mechanic and all of our acquaintances who know a little bit about cars are right and it can be fixed in just a couple of hours with a minimum investment.

Or maybe we should just buy a new engine...

 

[RLMunster]

Ok, I've decided to try and let this go.
Anyway if I have ALS which is highly unlikely there's nothing I can do anyway.
I won't post again unless something else comes up (slurring gets worse or I lose tongue strength)
Thanks all for the patience, and hope you understand that I'm scared I mean I'm 20 I have so many dreams, a whole life ahead of me I wish to live and these issues I've been having are a little concerning, slurred speech that has been noticed by my mother once is not normal but maybe it was just anxiety. Time to try and put it behind.
I will not post again unless I have an update, I'm probably going to see another Neuro and ask for EMG, I will post the results then.

 

[Nikki J]

This poster turns out to have been here several times before under different names. I apologize to the members who have expended so much precious energy repeating the same reassurances.