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ALS/Lou Gehrig's, Muscle Twitching, Swallowing Difficulties, Neurologist Exam, EMG. Serious?
Question: anyone online with experience in dealing with ALS/Lou Gherig's?
became concerned about ALS when I started experiencing muscle twitching approx two months ago. had full neurologist exam, and results were normal. had two EMG exams (on my request), both were also normal, and showed no fasciculations, etc. the EMGs were conducted on my arm and leg, and also on my jaw, my neck, and my back.
this is my concern - i am afraid that i am having swallowing difficulties, and thus am afraid of bulbar onset ALS. i do not choke on food or liquids, the only problem i have is that i often feel that a small piece of food becomes stuck in the very top of my throat, in the area between the throat and the sinus cavity. this feeling comes and goes.
if this issue were indicative of bulbar onset ALS, would either the neurological exam, the EMGs, or both, have shown something?
became concerned about ALS when I started experiencing muscle twitching approx two months ago. had full neurologist exam, and results were normal. had two EMG exams (on my request), both were also normal, and showed no fasciculations, etc. the EMGs were conducted on my arm and leg, and also on my jaw, my neck, and my back.
this is my concern - i am afraid that i am having swallowing difficulties, and thus am afraid of bulbar onset ALS. i do not choke on food or liquids, the only problem i have is that i often feel that a small piece of food becomes stuck in the very top of my throat, in the area between the throat and the sinus cavity. this feeling comes and goes.
if this issue were indicative of bulbar onset ALS, would either the neurological exam, the EMGs, or both, have shown something?
Hello and thanks for the query.
I understand your concern.
Regarding the muscle twitches that you are experiencing, it looks like related to a condition called as Benign fasciculation syndrome. This is seen in people who are very anxious. These does not indicate serious diesase like ALS.
Usually ALS starts in the age of 5th or 6th decade and can start either as bulbar symptoms or limb weakness, wasting of the muscles and fasciculations. EMG pick's up the diesase in the early stages. If two EMG are normal in you, it rules out ALS.
Regarding the food sticking in your throat, it may be related to local problems in the throat or may be psychological due to anticipation of major life threatening disease like ALS. Throat examination by ENT will rule out local problems.
So I personally feel you do not have ALS at this point of time. Do not worry as you dont have features which qualify for ALS.
Take care.
Regards,
I understand your concern.
Regarding the muscle twitches that you are experiencing, it looks like related to a condition called as Benign fasciculation syndrome. This is seen in people who are very anxious. These does not indicate serious diesase like ALS.
Usually ALS starts in the age of 5th or 6th decade and can start either as bulbar symptoms or limb weakness, wasting of the muscles and fasciculations. EMG pick's up the diesase in the early stages. If two EMG are normal in you, it rules out ALS.
Regarding the food sticking in your throat, it may be related to local problems in the throat or may be psychological due to anticipation of major life threatening disease like ALS. Throat examination by ENT will rule out local problems.
So I personally feel you do not have ALS at this point of time. Do not worry as you dont have features which qualify for ALS.
Take care.
Regards,
Above answer was peer-reviewed by :
Dr. Shanthi.E
Hi Dr. XXXXXXX
Thank you so much for your response.
There are some people online (not doctors) who try to say EMG results are not accurate, so I'm glad to hear you say they are, just like my neurologists do.
Just a couple of other questions - once twitches and muscle wasting are apparent, there would be significant clinical weakness, is that correct?
Also, how often does the disease strike in someone in their early 30s?
Last, I understand that bulbar onset is much less common than limb onset (ie. 25% of reported cases). Is that right? If so, I would think that the combination of ALS in someone of my age, and bulbar onset type, would be incredibly improbable...
Thank you so much for your response.
There are some people online (not doctors) who try to say EMG results are not accurate, so I'm glad to hear you say they are, just like my neurologists do.
Just a couple of other questions - once twitches and muscle wasting are apparent, there would be significant clinical weakness, is that correct?
Also, how often does the disease strike in someone in their early 30s?
Last, I understand that bulbar onset is much less common than limb onset (ie. 25% of reported cases). Is that right? If so, I would think that the combination of ALS in someone of my age, and bulbar onset type, would be incredibly improbable...
Hi,
Thanks for getting back to me
Regarding muscle weakness usually it is the last thing to start in ALS(Amyotrophic lateral sclerosis ), but will be evident once wasting and twitching are seen.
Regarding the ALS in the younger ages, usually manifest as limb weakness in the upper limbs followed by involvement of the lower limbs and then involves the bulbar musculature.
The incidence of ALS in the 30's is some thing like 1 in 10,00,000 and usually a positive family history is available.
So combination of ALS in your age group with bulbar onset is not described in literature so far, means so far not seen.
So i feel you at this point of time you are not suffering from ALS.
Wishing you good health.
Take care. Bye
Thanks for getting back to me
Regarding muscle weakness usually it is the last thing to start in ALS(Amyotrophic lateral sclerosis ), but will be evident once wasting and twitching are seen.
Regarding the ALS in the younger ages, usually manifest as limb weakness in the upper limbs followed by involvement of the lower limbs and then involves the bulbar musculature.
The incidence of ALS in the 30's is some thing like 1 in 10,00,000 and usually a positive family history is available.
So combination of ALS in your age group with bulbar onset is not described in literature so far, means so far not seen.
So i feel you at this point of time you are not suffering from ALS.
Wishing you good health.
Take care. Bye
Above answer was peer-reviewed by :
Dr. Radhika
Sorry, just making sure I have the number right - incidence in the 30s is 1 in 1,000,000 or 1 in 100,000?
And you haven't heard of any cases where bulbar onset in my age group? That's very encouraging!
And you don't feel that the "food sticking" issue I have described to you would be a "swallowing issue" as they mean with ALS? From what I've read, those swallowing issues are usually in conjunction with speech issues, as they involve the tongue, and patients simply begin choking on or aspirating their food. Is that right?
And you haven't heard of any cases where bulbar onset in my age group? That's very encouraging!
And you don't feel that the "food sticking" issue I have described to you would be a "swallowing issue" as they mean with ALS? From what I've read, those swallowing issues are usually in conjunction with speech issues, as they involve the tongue, and patients simply begin choking on or aspirating their food. Is that right?
also, i should definitely have confidence in the EMG test were run - if the results came out completely normal, i do not have ALS, either limb or bulbar onset? i didn't have one of the emgs done on both my neck and jaw, just to be sure.
Thanks for getting back to me.
Regarding bulbar onset ALS most present with choking or aspirating their food and once these symptoms occur on examination one can see wasting of the tongue with weakness of bulbar muscles.
ALS is a diffuse problem. Though it starts in the bulbar muscles, by the time one becomes symptomatic EMG changes become grossly evident in most of the other muscle groups adjacent to the bulbar muscles like cervical, thoracic and upper limbs. So it is not a concern to me at this point that emg was not done in the jaw muscles and neck.
So be cool and take care.
Bye
Regarding bulbar onset ALS most present with choking or aspirating their food and once these symptoms occur on examination one can see wasting of the tongue with weakness of bulbar muscles.
ALS is a diffuse problem. Though it starts in the bulbar muscles, by the time one becomes symptomatic EMG changes become grossly evident in most of the other muscle groups adjacent to the bulbar muscles like cervical, thoracic and upper limbs. So it is not a concern to me at this point that emg was not done in the jaw muscles and neck.
So be cool and take care.
Bye
Above answer was peer-reviewed by :
Dr. Yogesh D
sorry, i made a typo - i meant to say that in addition to the limbs, i DID have the EMG done in both the neck, the jaw, and the back. not the tongue specifically, but i've read that the neck and paraspinal areas are both indicated in testing for ALS with EMGs.
so, i can rest easy, for sure at this point??
so, i can rest easy, for sure at this point??
Hi,
Thanks for getting back to me.
Yes ,you are right in saying that neck and paraspinal muscles are included in the standard protocols of EMG(electromyograph) for ALS(amytrophic lateral sclerosis).
There was no EMG changes in you in the neck, jaw and the back which covers 3 individual segments where ALS can start.
So do not worry as you don't have ALS.
Take care.
Wishing you good health.
Bye
Thanks for getting back to me.
Yes ,you are right in saying that neck and paraspinal muscles are included in the standard protocols of EMG(electromyograph) for ALS(amytrophic lateral sclerosis).
There was no EMG changes in you in the neck, jaw and the back which covers 3 individual segments where ALS can start.
So do not worry as you don't have ALS.
Take care.
Wishing you good health.
Bye
Above answer was peer-reviewed by :
Dr. Radhika
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