ALS BULBAR? PLEASE HELP

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joseluis

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Hello everyone!

First of all I would like to convey my admiration to you, you are formidable. A few years ago (2019) I started with pain behind one eye, electric shocks all over my body and occasional fasciculations in my legs. In March 2019 I did an MRI, sensory potentials and clean EMG. During 2020 I have experienced more of these symptoms, with strange sensations when walking and running and punctual fatigue. In 2021 I have fasciculations all over my body (except tongue and shoulders) for 5 seconds that are in one leg and then it goes to my hand. I have muscle pain in the mornings that improves as the day progresses. In July I had an MRI and EMG done again and it was clean, the doctors tell me that I have psychosomatic anxiety but I have a hard time believing it honestly. I've been through 6 neurologists and they can't find the key. Currently I have pain in my wrist and when typing (I make a lot of mistakes) and it takes longer than before and I double-click many times with the mouse. Also when I have my legs crossed and without crossing I notice I feel stiff. In March 2022 I had an EMG done again, and it was clean in all my muscles, deltoids, legs, arms but now my tongue is swollen and I get stuck when I speak. The neurologist tells me that it is anxiety but I have begun to notice fasciculations in the tongue and tingling and burning. should I have another EMG test? Is it possible that I have bulbar ALS?
Take care of yourself, you are formidable and I feel my “little” empathy.
A very very big hug.
 

affected

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Hi, wow I'm sorry you are going through this.
Please read this really closely - it is our official position and answers you in a lot of depth, so you probably need to read at least twice.

ALS doesn't work even remotely the way your symptoms are happening and that is why your EMG are clean and your doctors won't entertain the idea it is on the table.

Please get help for your anxiety - it is very evident in your post and it really does work the way your are experiencing.
We sympathise deeply, but we can't move forwards with you. There are forums that are perfect for people in your situation however.

I truly wish you the best, honestly what is happening is very treatable if you will work with your doctors.
 

joseluis

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Thank you very much for your help. I understand what they tell me but every day I am worse, and I notice spasms in the tongue. I notice that my tongue is swollen, it is difficult for me to speak and I get very confused when speaking, especially with long words. In addition, of the indicated symptoms and intermittent fasciculations throughout the body, it is a "plac" in one place and goes to another. The truth is that I find it hard to believe that anxiety causes me all this but I will try to find an alternative solution. You are wonderful, thank you very much for giving this support.
 

KimT

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If I were you, I'd go to a speech pathologist. They are very good at pointing you in the right direction to figuring out what's wrong.
 

lgelb

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A dry, cracked tongue, often made worse by chapped lips, is a common reason for these issues as well. I would consider food allergies, weather, environmental allergies, and hydration.

And change furnace filters, etc.
 
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joseluis

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In July the neurologist told me that he spoke normally but every day it is more difficult for me to make the speech.
Isn't it possible that it is an onset of ALS? Thanks for your help. I was the last question, i promisse you!
 

Bestfriends14

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No, it's not possible that this is the onset of ALS. Period. Continue to work with your docs, but with all your clean clinical exams and EMGs, plus lack of symptoms, means you really don't need to be on this forum. That's a great thing.

Take good care
 

affected

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My husband died of bulbar onset. I can tell you honestly that it just doesn't happen this way.
You are sure it does, but that doesn't make it so.
You need to stop posting and follow our advice.
See your doctor again, see a speech pathologist and follow the medical advice.

If you refuse to believe, then join a forum for people with undiagnosed health concerns and discuss it liberally there.
This forum allows you to ask and be answered. We do not have to the time or resources to go around and around with you.

I wish you the very best and a return to full health. That is the only answer for you here, and that is great news!
 

joseluis

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Hi everyone.

I don't get an appointment with the speaking doctor until the end of the year. my speech is getting worse and worse, I get slurred when I speak and I'm afraid to talk to people because my speech sounds slurred although people do not realize my confusion in speech. I have fatigue when speaking and it gets worse when I'm nervous or talking to people. I also bite my tongue
In addition to the symptoms that I have been experiencing for years with normal tests, I have pain in my jaw, my hands burning and pain when I write and the burning in my legs and tingling in my jaw have increased.

I have seen that I have fasciculations in the language when I put it in movement.

I have been looking at my tongue in the mirror for many months, with the light of my cell phone, and there are days when my tongue moves more and others a little less.

Is it possible that ALS of these speech symptoms? I mean, getting bogged down a lot but not having a nasal voice. sometimes when I'm nervous I notice that my voice doesn't finish the sentence. Or a dis you get up with a twangy voice?
thanks for your answers and help. Blessings
 

Bestfriends14

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No, not at all like bulbar onset. Please continue to see professional help for your unfounded worries. Good luck to you.
 

affected

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Ask to see a speech pathologist while you are waiting, that could give you some first stage answers.
All this self examination and testing is making you hyperaware, so you need an objective opinion.
Even go back to your regular doctor and discuss all this again and ask them for a clinical exam and opinion.
If they don't hear the slurring, then you need to believe it.
All the best. Do let us know when you get some diagnosis.
 

joseluis

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thanks for your answer. They have already given me the diagnosis: psychosomatic anxiety but I don't believe it, my symptoms are real. my best wishes
 

ShiftKicker

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Hello Jose-

The people on this forum can not provide you with much more than the information and reassurance you've received already. We do encourage people to continue working with their doctors. You have been cleared of ALS via clinical exam and EMG. If you are experiencing further issues and deficits, these changes can be noted by physicians you have already seen.

Please understand that posting on this forum will not provide you with any further information, nor can we help you get diagnosed with what you fear. It is very clear you are not reassured, so you must seek some assistance with your anxiety while you wait for your next appointment.

I am closing this thread. Please do not start another.
 
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