Old 03-28-2010, 06:58 PM #1 (permalink)
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Default Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirty..

I am not looking to stir up any trouble but I think that only THESE type of conversations & posts will educate people. It helps to be wrong sometimes AND if I am wrong, Im gladly happy, in this situation.

I have, however come across a few posts here where Ive read that the emg was clean, then dirty. I DO NOT know ANY specifics but thought id post the two that sticks in my head.

If its clarifyed with a logical explanation (I am FARRRR from an als specialist) then it will have only helped ANY others that feel a clean emg can turn into a dirty emg from als later.


I also read someone who posted, they had 7 emgs before it showed dirty. (Im going to look for that one)

Personally, If I had the answers as to weather Emg picks up als LMN 100%, I'd be a Dr & last I checked, I wasnt,

Hopefully a post like this will clear a few worries for many~~

These are the posters I can remember.

ConnieS
Ama672
Lorie
Halfin

SandraD "I also have been seeing a neurologist who has told me he cannot completely rule out a neuro condition and I need to be followed every 3-6 months. I was told that I do not have ALS at this time
SHE ALSO CLAIMS TO HAVE "WEAKNESS"?
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Old 03-28-2010, 07:36 PM #2 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

Hello, Silverlining,

I do not recall the specifics of all the posters, but I do know that Ama 672 turned out to be someone who was having some mental health issues and extreme anxiety about ALS and posted some very inconsistent test results and symptoms and later came on and admitted that he was obsessed with ALS and it led to the loss of his fiancee, if I remember correctly.

As for ConnieS, I believe she initially had her EMG done by a general neurologist and later had it done by a specialist in neuromuscular disease. there can be some discrepancies there because many general neuros have no experience with ALS, as it is an exceedingly rare disease, and are not as skilled in administering the EMG or interpreting its results as those who specialize in ALS and neuromuscular disorders. I also think she lives in Asia and was perhaps not seen initially at an MDA/ALS association-certified medical center.

As for Halfin, he had bulbar onset ALS, which starts in the areas of speech and swallowing. I believe the EMG is often negative with bulbar onset ALS, but someone more knowledgeable than I can comment on that. The EMG also is only one tool that neurologists use to diagnose ALS, in addition to numerous other findings on exam.

As for Lorie, she stood alongside her brother as he declined from the effects of ALS and was his primary support and caregiver. As such, she was under enormous strain herself. I know she started to have some similar problems, but her brother died recently and she has not returned to update anyone about her own condition.

I am not a medical professional of any kind myself, but I believe from what I have learned here, and from what I was told by my neurologist, that if ALS was causing weakness in a particular part of the body and an EMG was conducted by a highly experienced neuro and it was normal, then something else other than ALS is causing the problem.

I hope that someone else who knows more about this will post, because I think this post is going to scare A LOT of people.

Sandra
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Old 03-28-2010, 07:48 PM #3 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

Hey SilverLining,

when I was researching this topic due to my continuous left upper arm atrophy, I did see some posts where a few people had mentioned clean EMG's initially only to find out later on that they did have ALS. I try not to think about it too much because I have had 2 clean EMG's thus far and I am attributing my muscle problem to some sort of injury.
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Old 03-28-2010, 07:48 PM #4 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

Sandra,

NOONE is looking to scare anyone. I think I mentioned that, in fact, I quote, "I am not looking to stir up any trouble but I think that only THESE type of conversations & posts will educate people".

EDUCATE being the main factor here. Lets put this to rest already. People are asking, over & over again. TrFogey asked for a few names, here are the few.

I think you saying, "This may scare people" is EXACTLY what they are afraid of. Perhaps they feel they are not being told the truth, just so you dont scare them.

This post is obviously necessary~~
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Old 03-28-2010, 07:58 PM #5 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

I thought I would contribute a piece of information quoted from my last clean EMG report:

"This study is normal and fails to provide any evidence of a peripheral nerve, muscle or root lesion that might account for the patient's symptoms. A mild peripheral nerve or muscle lesion, or a purely sensory nerve root lesion could be missed by these studies, but a significant injury affecting the tested nerves and muscles would not be overlooked. It is IMPOSSIBLE to have denervation of a muscle causing focal atrophy with a normal EMG."

I take some comfort in believing that the EMG would have picked up ALS, especially in my case when I am at the point of visible atrophy.
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Old 03-28-2010, 08:22 PM #6 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

I don't have too much more to add than SandraD posted (bravo Sandra) but I do have a few things to say.

Lori has not been diagnosed with ALS . . . AND . . . her EMG's have been dirty from the beginning. She was diagnosed with a peripheral neuropathy (abbreviated PN in her post) on her very first EMG and that was absolutely because of a dirty EMG.

Ama672 mysteriously disappeared after I pointed-out some inconsistencies in his story and I was actually PM'd by his fiance who stated he was a hypochondriac.

ConnieS was before my time and Halfin has explained his story on numerous occasions.

Enough with this non-sense of clean EMG's and then dirty EMG's. If someone has weakness and/or atrophy that is/are consistent with lower motor neuron involvement, then the EMG (in the hands of a competent neuro) is going to be dirty. That still doesn't mean the person has ALS, because dirty EMG's along with weakness and atrophy can be caused by a gazillion different things. The criteria for an ALS diagnosis are stated very clearly in a "sticky" on this forum.

Analogy: If I had headaches and I feared I had a brain tumor . . . and then got an MRI or CT scan and no brain tumor was found . . . then my headaches are not from a brain tumor. Does that mean I can't get a brain tumor later at some point in my life? Of course it doesn't, but at that very moment I don't have one and it sure isn't the reason I'm having headaches. The same holds true for an EMG. If the EMG is clean and there is muscle weakness and/or atrophy, those symptoms are not due to ALS or any neurological disorder for that matter. END . . . OF . . . STORY. Does that mean that person can't get ALS at a later time? Of course it doesn't. They will have the same chances as anyone else.

Take home message: People need to stop stating things, quoting things, researching things, etc. that they are not qualified to state, quote, research, etc. The internet is already filled with enough CRAP and it's stuff that we have seen on this forum as of late that pollutes it with even more CRAP.
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Old 03-28-2010, 08:25 PM #7 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

SilverLining,

Maybe, just for the sake of honesty, full disclosure, and all that jazz, you could pass along all the information that you have been given about this situation. Seems to me you and Wright and I had a discussion about this very phenomenon within the past week. I'm also sure that joebing could help you with this information quite easily since he was given the identical explanation you were given, perhaps even on the same day.

Or do you simply get some perverse form of jollies from signing on to forums and seeing how much trouble you can stir up? Frankly, that seems to be a weekend pasttime for you.
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Old 03-28-2010, 08:48 PM #8 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

TrFogey,

You are like a Monday morning quarterback.

Does it stir-up problems that this post has probably helped people? Why dont you ask? Ask the people that come here if these posts are harmful or helpful?

BTW, I didn't initiate this post,

TRFOGEY: "I see this claim made on this forum fairly regularly, so I'd appreciate some links to these cases that you folks claim are there. All I need is the member's name -- I'll be happy to look up their posts for myself. Let's start with a small sample -- how about 5 cases"?

This post was not about the lessons I have learned here but just to get the ball rolling for a thread, YOU requested. People read another person has had a clean emg then a dirty one. they are frightened! They want to know. Sometimes clarification is the best medicine for fear. This was not MY FEAR. I was helping.........

Why must you always see the glass as half empty?


PS: If me not posting ALL over CLEAN EMG=no ALS is percieved as being a person with a "perverse form of jollies from signing on to forums and seeing how much trouble I can stir up" Im sorry you feel that way. As I said Earlier, last I checked, im not a Dr & as far as I know, last I checked, neither are you.
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Old 03-28-2010, 09:44 PM #9 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

SilverLining,

Save the rationalization for your bizarre thoughts and actions for somebody who cares about your opinion. -- I no longer do. To me, you are nothing but a troll who stirs up a new pot of lies and fantasy whenever you feel the need for attention.

Yes, I did challenge someone to post the usernames of people who supposedly had clean EMGs and later had dirty EMGs. I did not tell anyone to start a new thread to collect those names. That was an invention of your mind -- possibly some vainglorious attempt to prove that you are the most thorough researcher of them all. Given how easily Wright debunked your first set of claims, I imagine that you're seeing that title slip through your fingers now, aren't you? And it couldn't happen to a nicer person.

And you had no intention of educating anyone -- you chucked that motive overboard in favor of the showstopping title you couldn't resist giving this thread. Scare people? Not you! It was that evil old trfogey that insisted on posting these untrue things under an inflammatory title, yada, yada, yada, yada.

You're right, SilverLining -- I'm not a doctor, and I never claimed to be one. Fortunately, I don't have to be one to recognize an obsessive liar who simply is not worth the trouble to communicate with. So, I'll bid you farewell and I hope that you get some help for whatever it is that ails you.
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Old 03-28-2010, 10:36 PM #10 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

TrFogey
I suppose if this was the first thread of mine that you chased after, only to criticize & belittle with your hurtful words, I would be surprised........Amazingly, im not!

For anyone who thinks I was posting to Create a STATE of Panic, forgive me. I knew this thread would call in the "expertise" of a few members to clarify some of your fears.


Sorry if I came out looking like the bad guy,
I know I received 2 Pm's thanking me so Im not sorry for posting what many of you were thinking.

Kimberly,
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Old 03-28-2010, 10:48 PM #11 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

PS: I wont be coming back anymore~~

TrFogey, I am a woman of faith. You have taken me out of character. I am not used to such words, used to deliberately cause upsetness.

If you see a post that obviously pisses you off, you should use that lil "x" on the top right corner of the box. Its there for a reason.

I will pray for you,

GL to all!
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Old 03-28-2010, 10:49 PM #12 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

SilverLining--

I said I was going to stay off this board because I don't have ALS and I don't want to be disrespectful to our PALS here. I don't know if you understand that we, undiagnosed/or in your case paranoid, are just guest here on this forum. And maybe its a southern thing gracious knows I'm not a saint...but being a "guest" would imply for one to leave company before one's welcome is worn out.

I think that the PALS here have more than explained everything possible to you and all the other toe freaks on this forum. I enjoy peeking in on the people here because I love our PALS, their courage, their characters, and inspirations gives me hope but honestly I am so tired of looking on the board and seeing your multiple posts of which most are hostile and redundant.

I have had 3 EMGs in the past 3 months all of which are clean. I have atrophy of the tongue, weakness, fascics, and well you name it..but you don't see me freaking out on our PALS and insulting them. And for others like me that have REAL symptoms to come on here and see all of your feather ruffling threads upset me and I don't want to be upset right now. I've lost enough of my life okay? They have the right to say to you anything they please..they are battling this disease..real life stuff girlie...

The best thing for you and all the other hyperchondriacs on this forum to do is to leave it all in your doctors and Gods hands. I could go and get a bad EMG tomorrow and leave the doctors office and get killed car accident. Please get on with your life sweety. If what you are experiencing is ALS, then you will have plenty of time to dwell on it later.

But right now, you can walk, you can talk, you can eat...thats more than some of our PALS, just please if you do decide to stay on this forum, check your paranoia and attitude at the login section.

We all care for everyone on this forum including you but the last thing all of us need esp me right now...is this negative thread.

All the best,

Kelly
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Old 03-28-2010, 10:54 PM #13 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

Silverlining,

I guess I somehow missed the part about me in your original post. did you go back and edit your post to include me in the list of potential people who have had clean EMGs? if so, why? I have never had a dirty EMG and have clearly stated on here many times that two neurologists, both of whom specialize in ALS, have said that I do not have ALS. I believe they said "at this time" because, as Wright said, anyone may develop a particular disease down the road, including ALS.

I had a normal EMG in June 2009 on both legs and an arm, conducted by a neurologist specializing in ALS and MS at a teaching hospital for a well-respected medical school. I am being followed by a neurologist every three to six months (actually now it is every 6 months) not because anyone has told me that they suspect I have ALS. In fact, at my last neuro visit in Dec., the only "neuro condition" that was mentioned as a possibility was MS, with a perhaps atypical presentation. I had a brain MRI that shows a few lesions in the white matter.

If you have read through all my posts, you might also have read that some of the symptoms have abated-- such as facial twitching that was nearly constant for much of last summer and cramping in various muscles-- and that waxing/waning also points away from ALS.

In any case, the reason the neurologist wants to see me periodically is not, as far as I know, because of any suspicion of ALS, but because I am having some problems that might add up to an as yet-unnamed neuro condition. There are many other people in this section of the forum who have similar, longstanding problems with no diagnosis. I believe, as people here have pointed out to me, that after a year now of this, I would be in a lot worse shape than I am if this were ALS. As I mentioned I continue to visit here because there are others with undiagnosed problems who I can run things by, as well as the PALS who have undergone extensive testing for various things before their diagnosis.

Despite your claims of wanting to "educate," I think you are doing a disservice to the people in this part of the forum by pulling only bits and pieces from other people's threads, without full knowledge of their condition, to support what seems to be an underlying belief that it is possible to have ALS and weakness caused by ALS, with a normal EMG. No one has said that.

It sounds noble to say that you are just trying to help others and that you do not have this fear yourself, but I think you really need to ask yourself whether this is true. All your recent posts suggest that you are deeply afraid that you have ALS, in spite of being told otherwise by a neurologist, and despite your normal EMG. A lot of us have been in this same situation, that's how we ended up here.

Good luck to you--

Sandra
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Old 03-28-2010, 11:56 PM #14 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

Silverlining,

I'm not quite sure how you think this will help "clear a few worries" since this post basically amounts to "the doctor might be wrong you STILL could have ALS." I'm also not quite sure why you write "SHE ALSO CLAIMS TO HAVE "WEAKNESS"?" after she explicitly states that there is almost no suspicion of ALS considering her symptoms. Do you think there is some sort of conspiracy with her claims?

Considering you probably went through many many old posts to find these case examples, I'm guessing that your health anxiety hasn't been completely dealt with. Mine hasn't been completely dealt with either, but I've gotten a bit better. Searching through countless old posts was doing me absolutely no favors before. I'm guessing it isn't for you either, but that's just an assumption on my part.

God bless,
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Old 03-28-2010, 11:59 PM #15 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

Said it on another thread. Any more sniping, bad language or abuse of another member will get you a two week time out. I have ALS and a few people are making me not like my own site. Love it or leave it. Act civil or be banned. Tired of this crap.

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