Could this be Als

[L4CA]

Thank you for your continued support.

I am still so concerned I may have some sort of bulbar going on.

My tongue sits to the right inside my mouth
I am biting on right whilst sleeping
It rubs against my teeth on right side when speaking

It sounds to me that I am finding it difficult to say some words like drawer, tree and s wordsetc. If I say them on their own it's fine but when I am speaking in a sentence the words can sound a bit slurry.
When I tense my tongue up and poke it out the tip points to the right
My lips seem thinner on the bottom as the most they have lost some tone


I just don't know what to do. I have read an emg can't pick up bulbar. Also I've seen the neuro 4 times. He had me puff out cheeks, show teeth, stick tongue out flat, observed tongue at rest in my mouth. I even went back to him
And showed him it tensed up and he said it was normal looking. He tested strength of tongue and jaw reflex several times. He says my speach Is perfect. Whilst I know it doesn't sound abnormal to other people the words sound different and harder to say to me.

I've also read about other people saying they had tongue problems for 4 years etc and were told all ok and then diagnosed with ALS. This whole situation is making me so anxious.

I am so terrified more of the not knowing and that no One is listening to me and all saying it is stress. I don't m is where to go from here.

 

[ShiftKicker]

Not sure what more this forum can help you with. No one here can provide you a medical exam, nor can members here seem to reassure you. Neither can your doctors, it seems. It sounds like you are convinced of your potential ALS, regardless.

I am in no way dismissing your health concerns. I think it's super important you find a doctor who will listen to you and help you work through your physical symptoms- and to get a handle on your anxiety over these symptoms. Anxiety can and will cause many physical difficulties. If you deny anxiety, then going to a doctor who specializes in anxiety should be your next move in order to rule it out. A psychiatrist is a trained medical doctor who is definitely able to differentiate between the symptoms of anxiety and any other physical malady. I can not recommend it enough.

Best wishes

 

[L4CA]

Thanks.

This is the issue in that it is being diagnosed as anxiety. I do have anxiety but I just don't see how it can cause me to be biting my tongue and my tongue constantly drifting to the right when I'm sleeping etc. And the speak issues. Surely there must be some sort of physical reason?

Does it sound like bulbar ALS?

Thanks again.

 

[Lkaibel]

No, it does not and you have been told near as I can tell that it does not by Doctors.

 

[lgelb]

L4, we have already established that you have untreated sleep apnea, per your report. That's like throwing sugar into engine oil every day. Why don't you get it treated? You will feel much better. But you don't belong here.

Best,
Laurie

 

[Atsugi]

L4CA wrote: "I just don't see how it can cause me to be biting my tongue."

You don't see that because you're not a doctor.


"Surely there must be some sort of physical reason?"

There IS a physical reason that anxiety causes biting. Because your physical brain is telling your jaws to bite your tongue. The physical brain (psych) can do very many big things.

EDIT: Let me add a story. Last spring, I took some weight loss pills. Great results. But a few weeks into it, my tongue showed white spots that were terribly painful. Eventually we found out that my mouth had gotten hyperactive and keep moving, biting my tongue. So I quit that pill 9 months ago. But my mouth still moves, all day and all night. That pill changed my brain somehow. We know combat can change a brain. LSD can change a brain. Why not anxiety?

"Does it sound like bulbar ALS?"
Not at all.

 

[L4CA]

Tha k out for all that you have said and the support.

I am at a loss because I genuinely believe I have bulbar onset. This all started with pressure around my eyelid which I then discovered twitches all the time when I close it. In phototgraphs my eye has changed and looks small.i failed a visual field tests MRI was clear. I have opthamologist end of Jan.

But since this happened I felt pain in my facial muscles and I genuinely believe the tone has changed. My lips also feel and look flatter to me and when I smile the corners are wider than usual.

Inside my mouth it looks like my cheeks are caving in and near touching my teeth. The constant biting my tongue in sleep. Tongue is scalloped one side. I also I just hear myself finding it difficult to speak properly. It's not slurring as such altho sometimes a small slur but it's like it's difficult for me to actually speak. I'm going to use the word feel but it feels like I've had a few drinks or that I'm pulling the corners of my mouth. I also notice that when I drink liquid I need to clear my throat. I have also been struggling to clear the back of my throats like form post nasal drip.

I am at a complete loss. I have seen a lead neurologist at the neuro specialist centre for the country 4 times and he has examined all of these things in terms of facial muscles etc and tongue. He has also completed numerous strength tests and reflexs etc and said all normal. He is saying it is all normal. He has been practicing since 1886. But he has only known me since the symptoms started and I fear it's too early for him to clinically see it all.

I did have the emg of my legs, hands and arms which was normal and yet I also seem as thought toes drag on one foot.could the emg have been too early? The emg was done by another specialist who diagnoses ALS weekly.

I read lots of stories on here and those with bulbar appear to have these symptoms yet I can't seem to get a neuro to take me seriously. I am told it is all anxiety.

I am crying every day with the fear and also just the not knowing either way.

 

[ShiftKicker]

Hi there-

I'm not sure how this forum can help you. The people here have answered you. The people here are not able to give you physical exam. You will not even believe a specialist in ALS. Again, go see someone who can help you with your anxiety while you continue to work with your doctor to find answers.

This is in no way a dismissal of your health concerns, only that the people here are not able to help you figure out what is wrong. Your presence here is likely to be adding to your health worries- you must seek proper medical help.

 

[Atsugi]

One dark night a man sees a tiny spot of light at his feet, so he stands there. The light is getting brighter at his feet, and all around him it's dark. In the light at his feet he sees a railroad track.

A crowd of people notices that the light at the man's feet is coming from a locomotive engine rushing toward him on the track. "Get out of there!" everyone yells. "There's a train coming."

But the man says, "I have to stay here. I won't go into the darkness, because I don't know what might be there."

L4C4 must know she doesn't have ALS, but maybe she's afraid to find out what it really is, so she stays here. Whatever the real problem is, it's still coming, and she won't go to get it fixed.

L4C4, I suggest getting that anxiety fixed by a real, no kidding psychiatrist, before it kills you.

You need to leave here and stop wasting our time.

 

[L4CA]

Hi Mike

I went back to my gp today and she says that it is anxiety causing my symptoms. She says that I have been to see a well respected neurologist 4x and that I do not have bulbar ALS.she also read the report from the other specialist who did the emg which said the results are normal and show that there is no nerve or muscle disease at all. But I know the emg will. It show bulbar.

I asked her about a second opinion. She said she wants me to leave it a few more weeks to see if things settle down.

To me my bottom lips looks like it is loosing muscle tone. If it had though would I still be able to whistle and pucker my lips?

I know you are all fed up with me. I just don't k ow where to go from here. I am in the U.K. So I need my gp to refer me to specialists and she is saying that I have seen the specialists.

 

[Atsugi]

... gp today and she says that it is anxiety causing my symptoms. She says that I have been to see a well respected neurologist 4x and that I do not have bulbar ALS.she also read the report from the other specialist who did the emg which said the results are normal and show that there is no nerve or muscle disease at all. But I know the emg will. It show bulbar.

Yep. I know, L4CA, I know. You can't let it go. That's a serious problem.

Your GP is right. Follow her advice.

We're not fed up with you, we just can't help you with the problem you have. Being here is bad for you. So I'm letting you go, for your own good. Banned.