Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirty..
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Thank goodness for you Al ~ this is just over the top. It is even giving me anxiety ~ This is a "SUPPORT" group and I for one, get much more support and kindness than I ever thought possible.........................With this disease looking everyone in the face , ANY FORM of disrespect should be banished ! Silverlining , Do you REALLY know what these PALS/CALS go through daily ? I think not. Peace be with you, CATE
wheeler641
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silver lining, I have not been able to move 2 of my toes for over 2 years now, do I have als, no I do not. I am going for another emg later in april, but it is to r/o neuropathy not als. Stop worrying so much and start looking for other answers as thee is a bunch of stuff than can cause your problem, well I am out the door, havng minor surgery this morning, margaret
serenade
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If everyone is so tired of all this then stop responding to all her posts. Everyone is seeking the last word and defending your position,there is no last word to be had or a position to defend . All of this just fuels the fire, what she is looking for can't be answered on this forum apparently to satisfy her quest for answers. This is better off to be left to the proffessionals. I do hope this is the last word on this post!
Judy
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That's right Judy. Maybe like on the Sapranos (or the Family Guy episode which refers to the Sapranos), this thread will just fade to black and end mid senta............
whatsgoingon
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Hi guys,
Sorry if you are getting upset with all this but I think none of us have bad intentions.
Indigdosed: about my PM: I've interpreted the post wrongfully, I'm sorry. I just wanted to know if you knew of any links between ALS and those diseases. That's all.
I'm going to try to explain something and hope you can understand this. PLEASE I MEAN THIS WELL AND TO HELP OTHERS
About the clean EMG and still ALS:
One type of people that come on this board are complaining about having twitches, after some googeling they see that this is a symptom of ALS
What happens next, they go to docs, neuro's, get EMG's get diagnosed with BFS. But in the meanwhile, the waiting to get to a neuro they start browsing the internet on end up on this forum
They start reading as many posts as they can. They want to be sure no one with fasciculations that got an emg that was clean got ALS in the end.
But they find some posts were people post they started with fascics got clean EMG but after a while it went dirty and diagnosed BFS goes to ALS.
- A few examples: member scared of ALS : 5 clean emg's and after a year ALS
member guwainengle: told about a friend who had a lot of EMG's and his 7th became dirty and was diagnosed with als
Those people also read about twitching BEFORE weakness or atrophy. They have been told by neuro's : twitching with no weakness is no ALS
But ofcourse after reading posts where people say their first symptoms were fasciculations, trust in docs is gone. They also read that some people twitches uptil 2-3-4 years before weakness.
- Examples: zenarcher, quadbliss, melodyparish, ... a lot pals had twitching as first symptom without any weakness.
So there are some of those stories here on the forum, so people freak out about this and try to find what is true about it, and if this happens a lot etc.
I'm one of them.
I hope you understand what I'm trying to say here, I think it would be very helpful to actually get those stories in one place so they can be cleared or discussed.
I will probabely get a lot of bad words over me now but I think it's important for all new people that come on the board because the same questions keep coming over and over again.
At Wright, if I look trough your posts I can see you were once in the place I and many others are right now, scared and hopeless, but you have seem to be forgotten that you once were there.
I think you are also not a doctor and have read a number of posts were you say ' this is not an emg report of an als patient, you don't have als, but some of them ended up with ALS.
Please please, get those stories in the open, get them figured out, be spoken of. Discuss why some clean emg's go dirty, when this can happen, twitching timeframes, some people even talk about symptoms for 8 years before diagnosed. and so on. I think we would achieve much more that acting like this to each other.
I honestly believe we all togheter know more that neuro's, I mean this. I think they don't have a clue when it comes to ALS. So much misdiagnoses, years to get diagnosed, no therapy,...
To close, I think the post important questions that need to be answered for a lot of people (undiagnosed) here are:
- Who started with fascics and how look did it take to get weakness?
- Who started with fascics , had clean emg but got dirty after a while and got diagnosed with ALS
- Who had clean EMG in the beginning and later dirty ones (maybe types?)
Okay and now let all the harsh words hit me, like always...
Sorry if you are getting upset with all this but I think none of us have bad intentions.
Indigdosed: about my PM: I've interpreted the post wrongfully, I'm sorry. I just wanted to know if you knew of any links between ALS and those diseases. That's all.
I'm going to try to explain something and hope you can understand this. PLEASE I MEAN THIS WELL AND TO HELP OTHERS
About the clean EMG and still ALS:
One type of people that come on this board are complaining about having twitches, after some googeling they see that this is a symptom of ALS
What happens next, they go to docs, neuro's, get EMG's get diagnosed with BFS. But in the meanwhile, the waiting to get to a neuro they start browsing the internet on end up on this forum
They start reading as many posts as they can. They want to be sure no one with fasciculations that got an emg that was clean got ALS in the end.
But they find some posts were people post they started with fascics got clean EMG but after a while it went dirty and diagnosed BFS goes to ALS.
- A few examples: member scared of ALS : 5 clean emg's and after a year ALS
member guwainengle: told about a friend who had a lot of EMG's and his 7th became dirty and was diagnosed with als
Those people also read about twitching BEFORE weakness or atrophy. They have been told by neuro's : twitching with no weakness is no ALS
But ofcourse after reading posts where people say their first symptoms were fasciculations, trust in docs is gone. They also read that some people twitches uptil 2-3-4 years before weakness.
- Examples: zenarcher, quadbliss, melodyparish, ... a lot pals had twitching as first symptom without any weakness.
So there are some of those stories here on the forum, so people freak out about this and try to find what is true about it, and if this happens a lot etc.
I'm one of them.
I hope you understand what I'm trying to say here, I think it would be very helpful to actually get those stories in one place so they can be cleared or discussed.
I will probabely get a lot of bad words over me now but I think it's important for all new people that come on the board because the same questions keep coming over and over again.
At Wright, if I look trough your posts I can see you were once in the place I and many others are right now, scared and hopeless, but you have seem to be forgotten that you once were there.
I think you are also not a doctor and have read a number of posts were you say ' this is not an emg report of an als patient, you don't have als, but some of them ended up with ALS.
Please please, get those stories in the open, get them figured out, be spoken of. Discuss why some clean emg's go dirty, when this can happen, twitching timeframes, some people even talk about symptoms for 8 years before diagnosed. and so on. I think we would achieve much more that acting like this to each other.
I honestly believe we all togheter know more that neuro's, I mean this. I think they don't have a clue when it comes to ALS. So much misdiagnoses, years to get diagnosed, no therapy,...
To close, I think the post important questions that need to be answered for a lot of people (undiagnosed) here are:
- Who started with fascics and how look did it take to get weakness?
- Who started with fascics , had clean emg but got dirty after a while and got diagnosed with ALS
- Who had clean EMG in the beginning and later dirty ones (maybe types?)
Okay and now let all the harsh words hit me, like always...
indigosd
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Whatisgoingon, obviously you read my reply to you on this thread https://www.alsforums.com/forum/do-...sitive-babinksi-sign-foot-drop-same-side.html because you now have a place of residence listed. Why did you choose again to not answer my direct questions that I asked of you? We are all frustrated. ALS is not a textbook progression for any of the PALS and there just does not seem to be any nice and tidy sign posts. uffda
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Whatsgoingon
I'll refrain from my harsh words and try to explain this in as calm a manner as possible.
If anyone has gotten a clean EMG and then later developed ALS, then those people had an upper motor neuron dominant presentation, and then later developed lower motor neuron death. If there are lower motor neuron symptoms, then the EMG will be dirty. END . . . OF . . . STORY. Read that over and over again and do your best to digest and retain it. I have explained the difference between upper motor neuron and lower motor neuron problems a gazillion times, but people just don't seem to understand it.
All of the people that you quote are lay people and don't have medical backgrounds or knowledge, so we are undoubtedly not getting the full picture . . . and as far as I know, all of the people that you cite can be fully explained. STOP taking a little piece here and a little piece there . . . pieces that clearly don't fit . . . and then try to put them together. That is not the way science and/or medicine works. The facts and material that you are trying to understand are clearly WAY over your head. And for you to say in another post that "they don't know anything about this disease" is a stupid statement at best. "They" know a lot about this disease because of the tireless research "they" do. Unfortunately they don't know enough to cure it yet . . . YET being the operative word.
As far as my ALS scare: I did have a scare but it was quickly thwarted when my neuro's told me I didn't have ALS. I had a dirty EMG, I had weakness, I had muscle atrophy and I had fasiculations . . . so I was completely justified in my fears. If I had just had muscle twitches and a clean EMG, then my fears would not have been justified, especially if my neuro told me I didn't have ALS. That is the big problem on here: People think they're smarter than their medically trained neuro's. They are not. It's a perfect example of someone having a little knowledge and it making them dumber.
Be done with this non-sense quest of yours that you feel is noble. It is doing nothing but raising fear on this forum and on the internet . . . fear that is not warranted. ENOUGH.
I'll refrain from my harsh words and try to explain this in as calm a manner as possible.
If anyone has gotten a clean EMG and then later developed ALS, then those people had an upper motor neuron dominant presentation, and then later developed lower motor neuron death. If there are lower motor neuron symptoms, then the EMG will be dirty. END . . . OF . . . STORY. Read that over and over again and do your best to digest and retain it. I have explained the difference between upper motor neuron and lower motor neuron problems a gazillion times, but people just don't seem to understand it.
All of the people that you quote are lay people and don't have medical backgrounds or knowledge, so we are undoubtedly not getting the full picture . . . and as far as I know, all of the people that you cite can be fully explained. STOP taking a little piece here and a little piece there . . . pieces that clearly don't fit . . . and then try to put them together. That is not the way science and/or medicine works. The facts and material that you are trying to understand are clearly WAY over your head. And for you to say in another post that "they don't know anything about this disease" is a stupid statement at best. "They" know a lot about this disease because of the tireless research "they" do. Unfortunately they don't know enough to cure it yet . . . YET being the operative word.
As far as my ALS scare: I did have a scare but it was quickly thwarted when my neuro's told me I didn't have ALS. I had a dirty EMG, I had weakness, I had muscle atrophy and I had fasiculations . . . so I was completely justified in my fears. If I had just had muscle twitches and a clean EMG, then my fears would not have been justified, especially if my neuro told me I didn't have ALS. That is the big problem on here: People think they're smarter than their medically trained neuro's. They are not. It's a perfect example of someone having a little knowledge and it making them dumber.
Be done with this non-sense quest of yours that you feel is noble. It is doing nothing but raising fear on this forum and on the internet . . . fear that is not warranted. ENOUGH.
whatsgoingon
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Why did you choose again to not answer my direct questions that I asked of you Indigosd; sorry I'm lost here, what questions are you refering too?
Alexandre
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Hello,
Twitches are lower right. I've got twitches showing up in my emg but the neuro said they were benign. How come my emg wasn't called dirty?
But now I have atrophy in my hand (between thumb and index finger) and NON stop fine twitches in that place . I guess my fears are justified too, right? I read that non stop twitches in that area are a very bad sign.
I've been told NO als for 2 years (emg was only done at the onset of twitching) but now suddenly I have to go to an ALS specialist in May because the neuro thinks (also a neuromusc specialist) something is going on and even let the word MND drop
Twitches are lower right. I've got twitches showing up in my emg but the neuro said they were benign. How come my emg wasn't called dirty?
But now I have atrophy in my hand (between thumb and index finger) and NON stop fine twitches in that place . I guess my fears are justified too, right? I read that non stop twitches in that area are a very bad sign.
I've been told NO als for 2 years (emg was only done at the onset of twitching) but now suddenly I have to go to an ALS specialist in May because the neuro thinks (also a neuromusc specialist) something is going on and even let the word MND drop
Moonmark
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I think only the original poster can close the thread, but I am not sure. uuughh... just as I suspected, it appears to be creating more worry than greater clarification. sigh.
whatsgoingon
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Why has this thread to be closed? We aren't getting any information if we act like this
IRismarie, have you been diagnosed with ALS?
I also read another disturbing post from Jeffp, he had shoulder twitch for 8 years prior to weakness
IRismarie, have you been diagnosed with ALS?
I also read another disturbing post from Jeffp, he had shoulder twitch for 8 years prior to weakness
indigosd
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DIRECT QUESTIONS for whatsgoingon
1. Male or female
2. AGE
3. Where do you live? Do you really live in Holland?
4. Do you have a profession? You seem to be here all the time.
last but not least, LEAVE MY FRIEND IRISMARIE ALONE!
1. Male or female
2. AGE
3. Where do you live? Do you really live in Holland?
4. Do you have a profession? You seem to be here all the time.
last but not least, LEAVE MY FRIEND IRISMARIE ALONE!
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