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hc1973

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Hello everyone, thanks for taking your time with my question.

4 weeks ago I started to notice a hoarsness in my voice after talking a bit. I shrugged it off as allergies as it is that time of year and I have always had allergies. The next day I started with body wide twitching. It did not improve but got worse and 2 weeks ago I started having a lot of trouble swallowing. I blamed this on post nasal drip, as I could feel it in the back of my throat, and still do.

After a week of this swallowing issue, I went to an ENT. He looked down my throat and said it looked irritated, ordered a swallowing test and said to change when I take my GERD meds. Swallowing test is next week.

The twitching has improved but not disappeared, only happening when I am at rest in random spots such as my knee, calf, bicep, hand, even buttock. I am still having a lot of trouble swallowing- not a problem with food or drink, but just my saliva. It feels like the back of my tongue is painful and not working correctly. My mouth and tongue seem very dry and the harder I try to swallow, the worse it is. I do have a feeling of globus once in a while, and have also had some pain with swallowing. There is still post nasal drip going on.

I am about going crazy with this and was wondering if you had any opinions if this sounds ALS-ish or not. It seems pretty fast, although I have noted an increase in saliva in the last couple months which I blamed on GERD. I have a neuro appointment in 2 weeks which is after the swallowing test so I will know more then. I just wonder if there is anything I should question or bring up during my appointment. Should I push for an EMG if he doesn't want to order one? Thanks for your help.
 

MaxEidswick

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Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


-----
Max - Monday, August 18, 2014 12:03:01 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 

CaptainPlanet

Active member
Joined
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Messages
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Reason
Learn about ALS
Diagnosis
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Country
US
State
CA
City
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Twitching that occurs only during rest is not ALS.

Congratulations.
 

hc1973

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Messages
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CALS
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Thanks for your replies. I am most worried about my swallowing and my voice, rather than the twitching. I am thinking the twitching is anxiety related due to worrying about my throat. I am still experiencing difficulty swallowing my saliva and my voice gets very hoarse and I must clear my throat often while talking.
Thanks for your time.
 

MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
}







/Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


-----
Max - Monday, August 18, 2014 12:03:01 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.


|
 

affected

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Bulbar symptoms are quite different. Fly and be free :)
 

ECpara

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Bulbar symptoms are tongue related - your tongue fails to get into position to make specific sounds. I can honestly say my husband is still not "hoarse" after 3 years of bulbar onset ALS. His voicebox can still make plenty of loud noise, he just can't move his tongue or lips to form any sounds. There was never any tongue pain. In my husband's case, twitching was never random, it was/is in a specific area and constant. It does not go away, it intensifies over time. From our perspective, you don't sound like ALS at all.
 

hc1973

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Thank you for your time and thoughts. I will generally follow up with my neuro next week and try not to worry in the meantime. Thanks!
 

Kosmoskatten

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This does not sound like ALS at all, rather a combination of GERD and anxiety, the latter enhancing the symptoms of the first.
 

slpretired

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My husband has been diagnosed with bulbar ALS.....keep your appointments with
your neurologist and pulmonologist are key to a diagnosis.
 

MaxEidswick

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>My husband has been diagnosed with bulbar ALS.....keep your appointments with
your neurologist and pulmonologist are key to a diagnosis.

Ditto that!

Appel?
 

hc1973

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pa
Hi all.. just wanted to give a little update. I had my swallowing study done and the pathologist and radiologist said everything looked normal at the time of the test. I am continuing to have some the same issues with the back of my tongue not working right. Now it seems that I am pushing food and drink into the back of my sinuses. I have not had a full nasal regurgitation, but I can feel it back there going up. This causes a lot of phlem and anxiety of course. Water is the worst.

I would say it almost feels like the back/middle of my tongue doesn't do what it should. Sometimes it feels like my tongue is tingly and slightly burns. I go back and forth between too much saliva and a dry mouth. It hurts my throat to try to sing or talk a long time. I notice a little air sound from my nose after swallowing now too. Who knows if it has always been that way or not and now I'm just paying attention. I also don't want to speak any more. I do still notice some hoarseness and I am afraid to talk because I don't want to know if I'm slurring.

Anyhow, my neuro is on Monday, and although he is an MS specialist I am going to ask for the EMG testing. I will post after then. Thanks for listening!
 

slpretired

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Not Appel but Elliott with UT Southwest - Dallas
 

MaxEidswick

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>he is an MS specialist

don't trust 'em. most cannot spell ALS ...
 

skipper66

Very helpful member
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My father sees a Dr. Heinzman in Dallas and really likes the ALS clinic there. If you live near Dallas you might try to see him instead.
 
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