patricia1
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Thats exactly what my neuro said .ALS diagnosed shouldn't come up until every avenue had been looked at .
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TedH5
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Perceived weakness is not Clinical Weakness...just because you or anyone for that matter thinks they are weak it is often confused with fatigue. If a Neuro does not find weakness then you are not weaker.
If any worrier or anyone else wants to truly understand what is involved with reaching an ALS diagnosis then educate yourself on the El Escorial criteria and the process and tests involved with reaching that criteria. This is a very informative and educational link.
http://www.alsa.org/assets/pdfs/fyi/criteria_for_diagnosis.pdf
SEproud
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But, I believe what TR and Wright work so hard to impress upon scared people on this forum is that if there is an absence of weakness a clean EMG = no ALS. They say this to people who have had no clinical weakness. So that would be different than the posters case because I think she wrote that she DID have clinical weakness. So, to help TR's work not be completely ruined by this one post, he says clean EMG = No ALS when you have no clinical weakness. Which didn't apply to this case, I don't think. I may be mistaken but I don't think TR or Wright have ever said ignore clinical weakness if you had a clean EMG.
patricia1
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UMD has never come up. I was told there are various Form of ALS and I obviously have the slow progessing one .Or maybe you know what I have UMD. I need to speak to my five neurologists that missed that .
Thanks for the insight
Pat
Thanks for the insight
Pat
wright
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Exactly . . . ALS (a type of MND) that starts as upper motor neuron dominant . . . ALS that starts as lower motor neuron dominant . . . MND that causes solely upper motor neuron dysfunction (i.e. PLS) . . . MND that causes solely lower motor neuron dysfunction (i.e. PMA). There are also other types of MND that I haven't mentioned. That is exactly my point and that is what the neuro's are talking about when they say that there are variants.
When it comes to progression, that is a different story but at the same time, can be related to the type of MND one has. Some move quicker than others, and at the same time, sometimes the same exact variant moves quickly in one person and slowly in another. As I also said, there is an awful lot that is being left-out of the story and it needs to be addressed, because there are an awful lot of people out there that know nothing more about MND and ALS than how to spell them. That is precisely why clarification is needed or it will cause panic and has caused panic. You should see the messages in my inbox right now from the panicked people due to this thread.
When it comes to progression, that is a different story but at the same time, can be related to the type of MND one has. Some move quicker than others, and at the same time, sometimes the same exact variant moves quickly in one person and slowly in another. As I also said, there is an awful lot that is being left-out of the story and it needs to be addressed, because there are an awful lot of people out there that know nothing more about MND and ALS than how to spell them. That is precisely why clarification is needed or it will cause panic and has caused panic. You should see the messages in my inbox right now from the panicked people due to this thread.
rose
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ARS06, if the 'she' you cite in your last post was me, then yes, I had weakness from the outset. It was my voice and breathing affected first.
Wright was right in that I am extremely rare in presentation. Even Patricia is more common in that it was her speech affected first, whereas with me it was my voice. When we say rare, its just that. I have been the subject of staff meetings at Johns Hopkins.
The ONLY reason I got involved with this thread was to clarify that 'never's' and 'alway's don't exist in this world. But, to simplify what I related is a much bigger distortion than a blanket statement that EMG has to be abnormal from the outset.
Ted's point about the skill of the Neuro conducting and interpreting the EMG is excellent, and very important.
What Pat said, and also hjlindley, is very important. In my own experience, I had weakness, and when my first abnormal EMG (bulbar) was diagnostic for motor neuron disease, it wasn't like any of my doctors thought it was conclusive enough to say that was what was wrong. None of them even brought MND up for a couple of more months.
Did everyone who's worried catch what I just wrote? I'll say it again: Even with dirty bulbar EMG not a single doctor said to me, "that's it, you've got MND, or ALS". Read it again if you didn't focus on what I said. Its that important.
The first time it was brought up was during a phone conversation with my laryngologist who said it was my cranial nerves responsible for problem with voice. Testing in the next month or so confirmed I also had problems swallowing that I was not consciously aware of yet—which brings me to my next point: perception of problems with speech and/or voice that no one else other than the person experiencing it notices.
I absolutely could not tell my voice was 'off'. People would ask me if I had a cold, or if they'd wakened me (phone call) I worked odd hours, so that was a normal assumption and I didn't think anything of it. I had this one elderly neighbor that was so sweet to me, in fact, I think he was sweet on me, lol, and every time he'd see me, he'd ask me if I was sure I wasn't sick, because something was wrong with my voice. It was months after that before I could hear it.
If you think you sound nasally, or whatever, have someone record you voice while you're unaware, and play it back to compare with an older recording such as an answering machine message that is in your voice, or you greeting on your cell phone.
MND is insidious. It sneaks up on a person. If a person has an aggressive form of it, to where the onset is not slow and vague, then, there would be clear cut signs for any doctor to see.
as ARS06 pointed out, TRfogey and Wright always emphasize the importance of clinical weakness. ALS is, after all about weakness that leads to eventual paralysis. Its not about twitching. Its not about waking up with a sore throat, or sudden episodes of tingling. (just random examples)
I do believe, just from what I've read over the years on this forum, that people with substantial upper as well as lower motor dysfunction experience a more rapid progression, than those who are mostly one or the other. Pure forms of that being PLS and PMA. I'm not saying this as gospel, just seems to be the pattern I myself have seen.
BTW, Wright, no I don't think muscles for breathing were ever EMG'd for me. I only remember arms and legs and of course bulbar.
Wright was right in that I am extremely rare in presentation. Even Patricia is more common in that it was her speech affected first, whereas with me it was my voice. When we say rare, its just that. I have been the subject of staff meetings at Johns Hopkins.
The ONLY reason I got involved with this thread was to clarify that 'never's' and 'alway's don't exist in this world. But, to simplify what I related is a much bigger distortion than a blanket statement that EMG has to be abnormal from the outset.
Ted's point about the skill of the Neuro conducting and interpreting the EMG is excellent, and very important.
What Pat said, and also hjlindley, is very important. In my own experience, I had weakness, and when my first abnormal EMG (bulbar) was diagnostic for motor neuron disease, it wasn't like any of my doctors thought it was conclusive enough to say that was what was wrong. None of them even brought MND up for a couple of more months.
Did everyone who's worried catch what I just wrote? I'll say it again: Even with dirty bulbar EMG not a single doctor said to me, "that's it, you've got MND, or ALS". Read it again if you didn't focus on what I said. Its that important.
The first time it was brought up was during a phone conversation with my laryngologist who said it was my cranial nerves responsible for problem with voice. Testing in the next month or so confirmed I also had problems swallowing that I was not consciously aware of yet—which brings me to my next point: perception of problems with speech and/or voice that no one else other than the person experiencing it notices.
I absolutely could not tell my voice was 'off'. People would ask me if I had a cold, or if they'd wakened me (phone call) I worked odd hours, so that was a normal assumption and I didn't think anything of it. I had this one elderly neighbor that was so sweet to me, in fact, I think he was sweet on me, lol, and every time he'd see me, he'd ask me if I was sure I wasn't sick, because something was wrong with my voice. It was months after that before I could hear it.
If you think you sound nasally, or whatever, have someone record you voice while you're unaware, and play it back to compare with an older recording such as an answering machine message that is in your voice, or you greeting on your cell phone.
MND is insidious. It sneaks up on a person. If a person has an aggressive form of it, to where the onset is not slow and vague, then, there would be clear cut signs for any doctor to see.
as ARS06 pointed out, TRfogey and Wright always emphasize the importance of clinical weakness. ALS is, after all about weakness that leads to eventual paralysis. Its not about twitching. Its not about waking up with a sore throat, or sudden episodes of tingling. (just random examples)
I do believe, just from what I've read over the years on this forum, that people with substantial upper as well as lower motor dysfunction experience a more rapid progression, than those who are mostly one or the other. Pure forms of that being PLS and PMA. I'm not saying this as gospel, just seems to be the pattern I myself have seen.
BTW, Wright, no I don't think muscles for breathing were ever EMG'd for me. I only remember arms and legs and of course bulbar.
trfogey
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Just forward all those panicked folks to the experts, Wright. They'll know exactly what to say to calm those poor people down.
glupavomomiche
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Ok I don't normally post on the ALSParanoia thread, but seeing as I have spent some time on both sides of the fence, I'll throw my 2 cents worth in today.
My probs started with my right hand losing dexterity and about 6 months later developing right foot drop. I also developed problems with the right side of my neck. No doctor in a million years would have called that ALS because it's not typical. Because my reflexes were brisk bilaterally and a "silent toe" on the right, the not-ALS-expert neurologists just kept telling me they had no clue, there were no upper motor neuron problem signs at all, and were taking random guesses at possible names for the problem (stroke or brain tumor that didn't show up on the MRIs, dystonia, and Wilson's disease were very popular ideas with those guys). I even had an EMG from a slightly reputable dude who poked me for about 15 minutes and called it clean enough (just some reduced recruitment which he led me to believe was nothing).
It wasn't until things continued to progress and I saw a real neuromuscular specialist that things started to make sense. These doctors know more. A silent toe isn't nothing... it's a Babinski sign when the other toe is downgoing (which for a time it was, but now it goes up and the other is still silent, which confuses new doctors when I see them, but oh well). This doctor finally recognized that the stiffness I complained about all the time was spasticity, not "you're just overexerting yourself and are sore." Apparently there is a difference between people who just have brisk reflexes naturally, and reflexes that are brisk from UMN problems, and this doctor could tell the difference. And finally that led to a very horrible 2-hour EMG from a very well trained EMG dude... which in turn led to a horrific-I-refuse-to-ever-have-another-one-it-was-so-freakin'-bad 3-hour-torture EMG done by the neurologist herself. It turns out, if you actually sit and wait after each stick, you might see things you would not with the stick-and-wait-two-seconds-then-move-on method. It was a very abnormal EMG.
So I guess what I'm saying is... when it comes to EMGs, look at the reputation of the doctor performing it, and look at how much time they spent. And for pete's sake, for peace of mind, if you really think it's ALS, go see an ALS specialist, let them do the EMG, and when they tell you no, then throw a party and go live life to the fullest because you still can and will for many decades to come. I can not fathom why you people want so bad for a doctor to tell you that you have ALS. All I know is I could not run away from that doctor's office fast enough when I got the news, but running did not help... there is nowhere to hide. I understand limbo is hell (yes, I was there for over a year and it does suck completely). So just get some balls, call up your closest neuromuscular expert, see 'em, get some tests, and then quit arguing with pALS online. Go walk in the park, talk to a real person, smell some daisies... whatever floats your boat.
And that's all I have to say about that.
My probs started with my right hand losing dexterity and about 6 months later developing right foot drop. I also developed problems with the right side of my neck. No doctor in a million years would have called that ALS because it's not typical. Because my reflexes were brisk bilaterally and a "silent toe" on the right, the not-ALS-expert neurologists just kept telling me they had no clue, there were no upper motor neuron problem signs at all, and were taking random guesses at possible names for the problem (stroke or brain tumor that didn't show up on the MRIs, dystonia, and Wilson's disease were very popular ideas with those guys). I even had an EMG from a slightly reputable dude who poked me for about 15 minutes and called it clean enough (just some reduced recruitment which he led me to believe was nothing).
It wasn't until things continued to progress and I saw a real neuromuscular specialist that things started to make sense. These doctors know more. A silent toe isn't nothing... it's a Babinski sign when the other toe is downgoing (which for a time it was, but now it goes up and the other is still silent, which confuses new doctors when I see them, but oh well). This doctor finally recognized that the stiffness I complained about all the time was spasticity, not "you're just overexerting yourself and are sore." Apparently there is a difference between people who just have brisk reflexes naturally, and reflexes that are brisk from UMN problems, and this doctor could tell the difference. And finally that led to a very horrible 2-hour EMG from a very well trained EMG dude... which in turn led to a horrific-I-refuse-to-ever-have-another-one-it-was-so-freakin'-bad 3-hour-torture EMG done by the neurologist herself. It turns out, if you actually sit and wait after each stick, you might see things you would not with the stick-and-wait-two-seconds-then-move-on method. It was a very abnormal EMG.
So I guess what I'm saying is... when it comes to EMGs, look at the reputation of the doctor performing it, and look at how much time they spent. And for pete's sake, for peace of mind, if you really think it's ALS, go see an ALS specialist, let them do the EMG, and when they tell you no, then throw a party and go live life to the fullest because you still can and will for many decades to come. I can not fathom why you people want so bad for a doctor to tell you that you have ALS. All I know is I could not run away from that doctor's office fast enough when I got the news, but running did not help... there is nowhere to hide. I understand limbo is hell (yes, I was there for over a year and it does suck completely). So just get some balls, call up your closest neuromuscular expert, see 'em, get some tests, and then quit arguing with pALS online. Go walk in the park, talk to a real person, smell some daisies... whatever floats your boat.
And that's all I have to say about that.
patricia1
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Wright what would be the advantage of me lying or half truths.The fact is I had many clean emgs.And I have ALS. Plain and simple
PLS and UMD was never mentioned to me. Because my symptoms was bulbar and normal exam and emgs.I was told that it was of unknown origin.Dr Bird actually apologized because l was walking into his office in six inch heels doing knee bends and kicked out my leg and threw him off of his chair and he couldn't diagnosed me .PLS I think your wrong this time Wright .PLS started in both my friend legs and then speech
What you tell people on the forum you read out of a texts or learned from a class you took.What I write on the forum I LIVED.
ALS is still a mystery to brilliant scientist . How is it you make statements with such authority and think your always right .
I am not trying to scare anyone. I want people to stay off the internet and stop scaring themselves .Go to your Md neurologist as many as you have to and if your still not happy go to a ALS specialist and come to the forum for support great tips experience and a lot of wonderful people that have and are going or went though the same thing .
Time tells the story of ALS sometime .not tests,texts people with BS and PHD, even doctors have a hard time.The internet is the worse and unfortunately most people google their symptoms and really get scared. Many things mimic als
.ALS isn't always painted with one brush
I are not ALS specialist or claim to be I could only tell my journey . which is unusual ,but my intention isn't to scare you .Its to protect and educate you though my experience only. I KNOW how scared some of you are .Many with no cause ,few with .
I will say it again .I found it sad when people come on the forum and are belittled and made fun of when they clearly have legitimate reason to worry
Thanks
Pat
PLS and UMD was never mentioned to me. Because my symptoms was bulbar and normal exam and emgs.I was told that it was of unknown origin.Dr Bird actually apologized because l was walking into his office in six inch heels doing knee bends and kicked out my leg and threw him off of his chair and he couldn't diagnosed me .PLS I think your wrong this time Wright .PLS started in both my friend legs and then speech
What you tell people on the forum you read out of a texts or learned from a class you took.What I write on the forum I LIVED.
ALS is still a mystery to brilliant scientist . How is it you make statements with such authority and think your always right .
I am not trying to scare anyone. I want people to stay off the internet and stop scaring themselves .Go to your Md neurologist as many as you have to and if your still not happy go to a ALS specialist and come to the forum for support great tips experience and a lot of wonderful people that have and are going or went though the same thing .
Time tells the story of ALS sometime .not tests,texts people with BS and PHD, even doctors have a hard time.The internet is the worse and unfortunately most people google their symptoms and really get scared. Many things mimic als
.ALS isn't always painted with one brush
I are not ALS specialist or claim to be I could only tell my journey . which is unusual ,but my intention isn't to scare you .Its to protect and educate you though my experience only. I KNOW how scared some of you are .Many with no cause ,few with .
I will say it again .I found it sad when people come on the forum and are belittled and made fun of when they clearly have legitimate reason to worry
Thanks
Pat
patricia1
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wright loves this stuff !
patricia1
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Wright your back peddling .This thread happened because of what you said! not what l said "clean emg means no als"OMG
should know the facts..I had clean emg and have als
I just told my story .
Facts are facts
SEproud
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Well TR, after the following quote you don't have to worry about being called the forum meany anymore! Yikes.
"So just get some balls, call up your closest neuromuscular expert, see 'em, get some tests, and then quit arguing with pALS online. Go walk in the park, talk to a real person, smell some daisies... whatever floats your boat."
Sorry TR and Wright, I appreciate all of your help over the past 6-7 months, ALOT. I know you would both rather be doing other things. I feel like ya'll are being abused for no reason.
"So just get some balls, call up your closest neuromuscular expert, see 'em, get some tests, and then quit arguing with pALS online. Go walk in the park, talk to a real person, smell some daisies... whatever floats your boat."
Sorry TR and Wright, I appreciate all of your help over the past 6-7 months, ALOT. I know you would both rather be doing other things. I feel like ya'll are being abused for no reason.
patricia1
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Rose I thank you for trying to clear things up. Doctors do have a hard time with als diagnosed.
Dr Rothstein at John hopkin had no problem at all.
I had the same test plus pfts every four months.Went from 85% to 29% in twelve years I think that is a good indication of your diagram muscle.
I worked for a group of doctors and they always say."there are those that do,and those that teach"
rose
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I think that it has become habitual to make it a priority to not add to the feeding frenzy of the anxious crowd. Which is well and good. Nothing wrong with that, except that the purpose of the forum is to help those who need help and are having true neuromuscular issues.
Who really is going to care enough to make time for the rare person who has real issues, when the last 'X' number of posters before them killed everyone's patience?
What impressed me, and I hope it becomes policy, is how Richard (rcharleton) handled a first time post from an obviously anxious 20 year old who posted his laundry list of symptoms that did not even vaguely resemble ALS.
Richard wrote: Your symptoms point away from ALS.
Please read the stickies at the beginning of this section. The answers you seek will be found there.
I'm closing this thread.
Best wishes.
And that was it, the thread stopped at 2 posts, no feelings were hurt, no one got frustrated, and importantly, no irrational fears were fed by multiple responses.
To me, if this could become standard policy, then much irritation could be avoided from the get go.
It would free up forum member's emotional energy to expend on more productive venues, and, when a new person comes across this section of our forum for the first time, it would help them get the attention they need, if their description of symptoms warrant attempts at help and support, or, if they are yet another anxious person, shutting the thread down asap will not feed their fears, or fears of others with similar unfounded fears. Its a win win game plan (IMO)
As an aside, glupavomomiche, my toes are mute too. I only have that (which is not always considered to be abnormal) and the cross adductor at knees for UMN signs in my legs. My reflexes went from +2 at time of diagnosis, to +1 in one leg, and +.5 in the other three years later. Upper body has brisk reflexes, and jaw jerk.
Who really is going to care enough to make time for the rare person who has real issues, when the last 'X' number of posters before them killed everyone's patience?
What impressed me, and I hope it becomes policy, is how Richard (rcharleton) handled a first time post from an obviously anxious 20 year old who posted his laundry list of symptoms that did not even vaguely resemble ALS.
Richard wrote: Your symptoms point away from ALS.
Please read the stickies at the beginning of this section. The answers you seek will be found there.
I'm closing this thread.
Best wishes.
And that was it, the thread stopped at 2 posts, no feelings were hurt, no one got frustrated, and importantly, no irrational fears were fed by multiple responses.
To me, if this could become standard policy, then much irritation could be avoided from the get go.
It would free up forum member's emotional energy to expend on more productive venues, and, when a new person comes across this section of our forum for the first time, it would help them get the attention they need, if their description of symptoms warrant attempts at help and support, or, if they are yet another anxious person, shutting the thread down asap will not feed their fears, or fears of others with similar unfounded fears. Its a win win game plan (IMO)
As an aside, glupavomomiche, my toes are mute too. I only have that (which is not always considered to be abnormal) and the cross adductor at knees for UMN signs in my legs. My reflexes went from +2 at time of diagnosis, to +1 in one leg, and +.5 in the other three years later. Upper body has brisk reflexes, and jaw jerk.
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