Let's pull together, its better that way
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patricia1
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Rose as you know l am on the same page as you .You put it eloquently .
The new people don't know what terrible losses we had over the years .I had to leave the forum after losing some wonderful people l met here
Don't punish someone if they are frightened .What they feel is real .
Ruling out ALS can take years .Yet some people on the forum do it after a paragraph .
No one told me l had ALS for five years .Seven neurologist later .
So if someone is annoying you ..do what Rose said PM them or ignore them .Don't harass them.Its non productive.
Be kind to one another
Patricia
The new people don't know what terrible losses we had over the years .I had to leave the forum after losing some wonderful people l met here
Don't punish someone if they are frightened .What they feel is real .
Ruling out ALS can take years .Yet some people on the forum do it after a paragraph .
No one told me l had ALS for five years .Seven neurologist later .
So if someone is annoying you ..do what Rose said PM them or ignore them .Don't harass them.Its non productive.
Be kind to one another
Patricia
wellington
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Rose
What a wise and compassionate woman you are! You and others in this thread are so correct; the fears are real - ranging from extreme (where someone is genuinely quite frightened about what their future might hold) to mild (from those who have no idea of the losses experienced by those that are making the often very difficult effort to respond).
I was a recent 'offender', having posted about my frustration with the frequent references to twitching by those that have few other symptoms or losses. I have felt very bad since.
A timely post. Good on you.
Lilly
What a wise and compassionate woman you are! You and others in this thread are so correct; the fears are real - ranging from extreme (where someone is genuinely quite frightened about what their future might hold) to mild (from those who have no idea of the losses experienced by those that are making the often very difficult effort to respond).
I was a recent 'offender', having posted about my frustration with the frequent references to twitching by those that have few other symptoms or losses. I have felt very bad since.
A timely post. Good on you.
Lilly
VoiceforLinda
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Rose,
Beautifully said! I am not your typical ALS case. I was not diagnosed based on EMG results. So many times I have wanted to respond to the DIHALS but held back. I think compassion and not diagnosing is the way to go. I think you are extremely valuable to the forum and should consider filling in the spots that are now open.
I support you and I believe in you.
Linda
Beautifully said! I am not your typical ALS case. I was not diagnosed based on EMG results. So many times I have wanted to respond to the DIHALS but held back. I think compassion and not diagnosing is the way to go. I think you are extremely valuable to the forum and should consider filling in the spots that are now open.
I support you and I believe in you.
Linda
I have to chime in here too, with Linda. I was not diagnosed based on EMG results. I had a extensive (well over an hour as I was very tolerant) including both feet, calf, thighs, back, and full right arm (not left he gave up), nothing at all, all clean EMG. He then tried my tongue as it was already showing atrophy and twitching wildly. Again nothing, but he said it was very hard to get a clear reading on anyone's tongue. I have kept this to myself not so much for the sake of those asking questions in DIHALS because I don't think the great majority of them will listen to anything anyone says but because it is in such contradiction to the almost fanatical insistence and advice given to those asking in the section that you simply can't have a ALS diagnosis without a "dirty EMG" and I haven't wanted to rock the boat. It would seem we have two right here!
Bliz
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kiwisally, linda:
The thing is people often do not distinct between UMN diseases and ALS. With UMN disease which ALS can start with, there is no lower motor neuron involvement and hence EMG is clear despite the weakness, cramps, increased reflexes etc.
Formally, no one can be given ALS diagnosis without correlating EMG findings as the norm dictates findings in given number of body regions. When there is a weakness and fasciculations, EMG - if done properly - displays the neurogenic damage.
So it is possible to have ALS with clean EMG, if it begins with UMN involvement and then the diagnosis is based on clinical examination. But in that case, there should not be severe atrophy and abundant fasciculations.
Regarding the tongue, it is true as its hard to keep it calm so the electrical activity from voluntary movement is interfering with the spontanneous one.
The thing is people often do not distinct between UMN diseases and ALS. With UMN disease which ALS can start with, there is no lower motor neuron involvement and hence EMG is clear despite the weakness, cramps, increased reflexes etc.
Formally, no one can be given ALS diagnosis without correlating EMG findings as the norm dictates findings in given number of body regions. When there is a weakness and fasciculations, EMG - if done properly - displays the neurogenic damage.
So it is possible to have ALS with clean EMG, if it begins with UMN involvement and then the diagnosis is based on clinical examination. But in that case, there should not be severe atrophy and abundant fasciculations.
Regarding the tongue, it is true as its hard to keep it calm so the electrical activity from voluntary movement is interfering with the spontanneous one.
Bliz
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kiwisally:
I am sorry. I mean - ALS is defined by degeneration by both upper motor neuron (UMN) and lower motor neuron (LMN). Usually ALS does not start with both LMN and UMN at once. EMG can pick up only damage on the lower motor neurons but if a patient has only UMN involved, EMG will be clear. Doctor can spot UMN involvement with clinical exam - hyper reflexes, more generalized weakness, pathological reflexes etc. In that case he can diagnose a patient with PLS and that often turns into ALS but he cannot - according to criteria - diagnose him with ALS as no LMN damage has be done (yet).
Fasciculations are LMN signs are usualy are missing in UMN involvement but it is not a rule (what is rule in this disease..) and there is no severe atrophy. With severe atrophy, weakness and fasciculations, EMG of that muscle will be dirty.
I am sorry. I mean - ALS is defined by degeneration by both upper motor neuron (UMN) and lower motor neuron (LMN). Usually ALS does not start with both LMN and UMN at once. EMG can pick up only damage on the lower motor neurons but if a patient has only UMN involved, EMG will be clear. Doctor can spot UMN involvement with clinical exam - hyper reflexes, more generalized weakness, pathological reflexes etc. In that case he can diagnose a patient with PLS and that often turns into ALS but he cannot - according to criteria - diagnose him with ALS as no LMN damage has be done (yet).
Fasciculations are LMN signs are usualy are missing in UMN involvement but it is not a rule (what is rule in this disease..) and there is no severe atrophy. With severe atrophy, weakness and fasciculations, EMG of that muscle will be dirty.
Last edited:
DeansWife
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Rose - what you wrote is beautiful. I've been turned off at times by the harshness shown to some who come here seeking answers. They are frieghtened people who have heard the term ALS and it scares them silly! When my husband was being diagnosed his neurologist told me to stay off the internet after throwing terms like motor nueron disease at me. Hah! Of course I came home and went straight to the internet and what came up scared me also. I kept praying that is was not ALS but alas, he received his diagnosis last August. I agree with what a lot of PALS/CALS wrote - compassion, just some simple compassion and leading them to their doctors for the correct diagnosis is in order. Thanks for taking the time to express what some of us felt!
rose
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The types of replies within this thread exemplify why this forum truly is special, and one we should all be proud to be a part of.
I understand the hesitation in bringing up the EMG thing when it comes to bulbarians (which all of us who have had normal EMGs are) That is another example of why we need to consistently direct those who are scared of what their symptoms might mean, to a doctor. We just can't speculate beyond what we know from our own lives.
Going to a very well qualified neuromuscular neurologist is key in more complex cases, because a person needs to be able to rely on the clinical exam findings as well as EMG/NCV. The EMG alone can't diagnose either.
But, if you are new to the forum, and don't have any sort of diagnosis, the place to start is your primary care doctor/internist. If your concerns are clearly up in your throat and mouth, starting with an ENT is also a very reasonable place to begin looking for answers.
As many know, I've had erratic EMG results which were abnormal and completely diagnostic for MND when testing my vocal cords, normal, or almost normal for my limbs although I have limb involvement. Variable results for my tongue. So, I too keep my head down (figuratively) when the discussions begin to fly on this subject. I still continue to hope that eventually there will be another cause found as my progression is not typical and I have some specific non-motor nerve involvement in that I have severely dry eyes and dry mouth. And, yes, for the armchair diagnosticians out there, I have been extensively tested and treated (with zero improvement) for inflammatory conditions including Sjogrens' and, in my case, it has been determined my dry eyes and mouth are caused by cranial nerve deficit, not inflammation or auto immune.
Giving examples from our forum, there have been those who were incorrectly diagnosed with ALS, when the neurologist was not thorough and felt normal EMG findings were not important enough to follow up with more testing. Read the posts from "Perplexed" if you want to know more. It turned out her husband had cancer instead of ALS, and valuable treatment time was lost.
Another member, Shatzie, received a diagnosis—which was stipulated with the word "caution" I think (?) by the well respected Houston neurologist Dr Appel, and she later was found to have MG instead. Her EMGs were diagnostic for someone with neuromuscular disease.
Then, there have been some who have been diagnosed with ALS by prominent neurologists such as Dr. Rothstein at Hopkins, despite having clean EMGs.
My point is, a diagnosis is not a "one size fits all" thing. Ever. I think Pat expressed this beautifully when she remarked that sometimes a person is "diagnosed" here after just a paragraph. How aptly put.
And please, let's not allow the gist of this thread get sidetracked with EMG debate and twitching concerns. One of the reasons I started it was to point out that we can't give someone definitive answers. Let's not get bogged down with whether the EMGs were normal because of upper motor dominance, etc, because, just using Shatzie as an example, she had bulbar involvement, drop foot, abnormal EMG and she turned out to have Myasthenia Gravis rather than ALS.
Finding out you or your loved one has ALS is devastating. Not knowing what is wrong and being afraid of the unknown is an unhappy place to find oneself. Hence, no one who comes to this forum comes here free of personal cares and concerns. We've already had a Bad Day before we walk through the door.
I understand the hesitation in bringing up the EMG thing when it comes to bulbarians (which all of us who have had normal EMGs are) That is another example of why we need to consistently direct those who are scared of what their symptoms might mean, to a doctor. We just can't speculate beyond what we know from our own lives.
Going to a very well qualified neuromuscular neurologist is key in more complex cases, because a person needs to be able to rely on the clinical exam findings as well as EMG/NCV. The EMG alone can't diagnose either.
But, if you are new to the forum, and don't have any sort of diagnosis, the place to start is your primary care doctor/internist. If your concerns are clearly up in your throat and mouth, starting with an ENT is also a very reasonable place to begin looking for answers.
As many know, I've had erratic EMG results which were abnormal and completely diagnostic for MND when testing my vocal cords, normal, or almost normal for my limbs although I have limb involvement. Variable results for my tongue. So, I too keep my head down (figuratively) when the discussions begin to fly on this subject. I still continue to hope that eventually there will be another cause found as my progression is not typical and I have some specific non-motor nerve involvement in that I have severely dry eyes and dry mouth. And, yes, for the armchair diagnosticians out there, I have been extensively tested and treated (with zero improvement) for inflammatory conditions including Sjogrens' and, in my case, it has been determined my dry eyes and mouth are caused by cranial nerve deficit, not inflammation or auto immune.
Giving examples from our forum, there have been those who were incorrectly diagnosed with ALS, when the neurologist was not thorough and felt normal EMG findings were not important enough to follow up with more testing. Read the posts from "Perplexed" if you want to know more. It turned out her husband had cancer instead of ALS, and valuable treatment time was lost.
Another member, Shatzie, received a diagnosis—which was stipulated with the word "caution" I think (?) by the well respected Houston neurologist Dr Appel, and she later was found to have MG instead. Her EMGs were diagnostic for someone with neuromuscular disease.
Then, there have been some who have been diagnosed with ALS by prominent neurologists such as Dr. Rothstein at Hopkins, despite having clean EMGs.
My point is, a diagnosis is not a "one size fits all" thing. Ever. I think Pat expressed this beautifully when she remarked that sometimes a person is "diagnosed" here after just a paragraph. How aptly put.
And please, let's not allow the gist of this thread get sidetracked with EMG debate and twitching concerns. One of the reasons I started it was to point out that we can't give someone definitive answers. Let's not get bogged down with whether the EMGs were normal because of upper motor dominance, etc, because, just using Shatzie as an example, she had bulbar involvement, drop foot, abnormal EMG and she turned out to have Myasthenia Gravis rather than ALS.
Finding out you or your loved one has ALS is devastating. Not knowing what is wrong and being afraid of the unknown is an unhappy place to find oneself. Hence, no one who comes to this forum comes here free of personal cares and concerns. We've already had a Bad Day before we walk through the door.
rose
Extremely helpful member
- Joined
- Mar 29, 2008
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- DX MND
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- 7/2008
- Country
- US
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- Maryland
- City
- Anytown
The types of replies within this thread exemplify why this forum truly is special, and one we should all be proud to be a part of.
I understand the hesitation in bringing up the EMG thing when it comes to bulbarians (which all of us who have had normal EMGs are) That is another example of why we need to consistently direct those who are scared of what their symptoms might mean, to a doctor. We just can't speculate beyond what we know from our own lives.
Going to a very well qualified neuromuscular neurologist is key in more complex cases, because a person needs to be able to rely on the clinical exam findings as well as EMG/NCV. The EMG alone can't diagnose either.
But, if you are new to the forum, and don't have any sort of diagnosis, the place to start is your primary care doctor/internist. If your concerns are clearly up in your throat and mouth, starting with an ENT is also a very reasonable place to begin looking for answers.
As many know, I've had erratic EMG results which were abnormal and completely diagnostic for MND when testing my vocal cords, normal, or almost normal for my limbs although I have limb involvement. Variable results for my tongue. So, I too keep my head down (figuratively) when the discussions begin to fly on this subject. I still continue to hope that eventually there will be another cause found as my progression is not typical and I have some specific non-motor nerve involvement in that I have severely dry eyes and dry mouth. And, yes, for the armchair diagnosticians out there, I have been extensively tested and treated (with zero improvement) for inflammatory conditions including Sjogrens' and, in my case, it has been determined my dry eyes and mouth are caused by cranial nerve deficit, not inflammation or auto immune.
Giving examples from our forum, there have been those who were incorrectly diagnosed with ALS, when the neurologist was not thorough and felt normal EMG findings were not important enough to follow up with more testing. Read the posts from "Perplexed" if you want to know more. It turned out her husband had cancer instead of ALS, and valuable treatment time was lost.
Another member, Shatzie, received a diagnosis—which was stipulated with the word "caution" I think (?) by the well respected Houston neurologist Dr Appel, and she later was found to have MG instead. Her EMGs were diagnostic for someone with neuromuscular disease.
Then, there have been some who have been diagnosed with ALS by prominent neurologists such as Dr. Rothstein at Hopkins, despite having clean EMGs.
My point is, a diagnosis is not a "one size fits all" thing. Ever. I think Pat expressed this beautifully when she remarked that sometimes a person is "diagnosed" here after just a paragraph. How aptly put.
And please, let's not allow the gist of this thread get sidetracked with EMG debate and twitching concerns. One of the reasons I started it was to point out that we can't give someone definitive answers. Let's not get bogged down with whether the EMGs were normal because of upper motor dominance, etc, because, just using Shatzie as an example, she had bulbar involvement, drop foot, abnormal EMG and she turned out to have Myasthenia Gravis rather than ALS.
Finding out you or your loved one has ALS is devastating. Not knowing what is wrong and being afraid of the unknown is an unhappy place to find oneself. Hence, no one who comes to this forum comes here free of personal cares and concerns. We've already had a Bad Day before we walk through the door.
I understand the hesitation in bringing up the EMG thing when it comes to bulbarians (which all of us who have had normal EMGs are) That is another example of why we need to consistently direct those who are scared of what their symptoms might mean, to a doctor. We just can't speculate beyond what we know from our own lives.
Going to a very well qualified neuromuscular neurologist is key in more complex cases, because a person needs to be able to rely on the clinical exam findings as well as EMG/NCV. The EMG alone can't diagnose either.
But, if you are new to the forum, and don't have any sort of diagnosis, the place to start is your primary care doctor/internist. If your concerns are clearly up in your throat and mouth, starting with an ENT is also a very reasonable place to begin looking for answers.
As many know, I've had erratic EMG results which were abnormal and completely diagnostic for MND when testing my vocal cords, normal, or almost normal for my limbs although I have limb involvement. Variable results for my tongue. So, I too keep my head down (figuratively) when the discussions begin to fly on this subject. I still continue to hope that eventually there will be another cause found as my progression is not typical and I have some specific non-motor nerve involvement in that I have severely dry eyes and dry mouth. And, yes, for the armchair diagnosticians out there, I have been extensively tested and treated (with zero improvement) for inflammatory conditions including Sjogrens' and, in my case, it has been determined my dry eyes and mouth are caused by cranial nerve deficit, not inflammation or auto immune.
Giving examples from our forum, there have been those who were incorrectly diagnosed with ALS, when the neurologist was not thorough and felt normal EMG findings were not important enough to follow up with more testing. Read the posts from "Perplexed" if you want to know more. It turned out her husband had cancer instead of ALS, and valuable treatment time was lost.
Another member, Shatzie, received a diagnosis—which was stipulated with the word "caution" I think (?) by the well respected Houston neurologist Dr Appel, and she later was found to have MG instead. Her EMGs were diagnostic for someone with neuromuscular disease.
Then, there have been some who have been diagnosed with ALS by prominent neurologists such as Dr. Rothstein at Hopkins, despite having clean EMGs.
My point is, a diagnosis is not a "one size fits all" thing. Ever. I think Pat expressed this beautifully when she remarked that sometimes a person is "diagnosed" here after just a paragraph. How aptly put.
And please, let's not allow the gist of this thread get sidetracked with EMG debate and twitching concerns. One of the reasons I started it was to point out that we can't give someone definitive answers. Let's not get bogged down with whether the EMGs were normal because of upper motor dominance, etc, because, just using Shatzie as an example, she had bulbar involvement, drop foot, abnormal EMG and she turned out to have Myasthenia Gravis rather than ALS.
Finding out you or your loved one has ALS is devastating. Not knowing what is wrong and being afraid of the unknown is an unhappy place to find oneself. Hence, no one who comes to this forum comes here free of personal cares and concerns. We've already had a Bad Day before we walk through the door.
TedH5
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Rose I think you would make the perfect moderator. I saw what you wrote and I would do it if asked as I am always to serve the ALS community, but I my results would pale compared to what you are capable of!
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