Old 01-02-2012, 06:12 PM #1 (permalink)
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Default clean emg

I have been reading back post since I haven't been on while waiting for my eyemax.
I have als thirteen years since 99 .My symptoms started with a lump in my throat a scalloped tongue associated with slightly slurred speech .
I was working as a nurse for a family practice and was sent for mri,ct,spinal tap,blood tests .All perfect .
I was referred to a emg specialist who said my emg was totally normal .
And was referred to a neurologist who said I had MG. After a thorough evaluation .
I was given medication that would show improvement right away if it was MG..
No improvement at all.
I was referred to Dr.Bird a als specialist in philly who gave me another more extensive emg.Normal again . And told me to come back in six months .

Six months later brisk reflex abnormal emg but not significant.I was told he couldn't explain my symptoms.So l went on with life.
In 03 I saw Dr Belch another emg which was Not normal muscle test slightly abnormal some weakness in limbs .and called it MND
Then in 05 and six years after original symptoms l noticed difficulty getting up from a beach chair holding my grandchild and trouble with weights at the gym
Went to John Hopkin saw Jeffrey Rothstein and with records in hand and physical exam told me probable ALS in 2005. Three normal emgs the first three years

So please Don't say normal EMG means no ALS. I felt compelled to inform people on the forum that clearly show signs of als,and are given the wrong information and in some cases laughed at belittled and told to get therapy I agree a lot of the stories are really off the wall and l am quilty of getting harsh with them and shake them into reality

But again a normal emg doesn't mean no als.There is no real test only a process of eliminations sorry for the lengthy post
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Old 01-03-2012, 03:08 AM #2 (permalink)
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Default Re: clean emg

Well, and what about UMN variant of ALS? That explains your clean EMG. If UMN is affected, you have weakness and increased reflexes but nearly no atrophy and fasciculations.
Also your slow progression is typical for UMN variant.
EDIT: I have been told by few ALS specialists but this does happen that UMN ALS or PLS is not being diagnosed correctly as EMG is clean, there are usually no fasciculations and its slowly progressing. If the weakness was caused by lower motor neurons damage, EMG would pick it up.
So I would say that "clean EMG=no ALS" applies at least for typical ALS with both LMN and UMN involvement.

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Old 01-03-2012, 06:49 AM #3 (permalink)
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Default Re: clean emg

A clean EMG most certainly means no ALS. As Blizna correctly stated, somoeone that develops ALS where the upper motor neurons are affected first would have a clean EMG initially but would certainly have symptoms of some type of MND (as you had). Later when the lower motor neurons are affected, then the EMG will be abnormal. You started with PLS and it morphed into ALS. It's as simple as that.

The difference between you and most of the others on here that are needlessly worrying about ALS, is that they complain of lower motor neuron symptoms and have clean EMG's. If someone has supposed lower motor neuron symptoms (and no upper motor neuron symptoms) and a clean EMG, then they do not have ALS. In fact, they don't have any type of MND or neuropathy for that matter.

I'm actually quite surprised you would post something like this Patricia, given how long you have been on this site. Your statements were full of half-truths and quite frankly, were misleading and probably did nothing more than worry people needlessly. Irresponsible if you ask me and if it was your intention to spread more misinformation on the internet, then you have succeeded. Congratulations.
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Old 01-03-2012, 08:37 AM #4 (permalink)
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Default Re: clean emg

My EMG's were normal for 3 years. When I asked the neurologist at UVA, he said that the disease was really slow on me and that was the last piece of the puzzle. Complicated, in my case, by 3 impinged nerves that were also causing muscle problems. But the only person who mentioned ALS was my neurosurgeon. I speak medical, having worked in the industry for many years, so many physcians tend to talk to me like a second year resident. But neuro tested heriditary pressure point neuropathy and lots of other things, eliminating them one at a time. The old saying "If you hear hoofbeats, don't assume it's a horse." We are all different, the darned disease has many disguises, but believe a Board Certified Neurologist withu a teaching hospital. Neuro didn't make a definative diagnosis until they had turned over EVERY rock.
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Old 01-03-2012, 10:29 AM #5 (permalink)
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Default Re: clean emg

I don't think Patricia was intending on imparting half truths.

There are some of us who fall outside of the proverbial 'box', and for the most part we stay silent when the dreaded normal EMG discussions take place.

It is true that in over 99% of cases, EMG picks up abnormalities before the person can perceive a problem.

For most who have had ambiguous, or conflicting test results, we have very slow progressions, Patricia is one good example. hjlindley is another.

I have had several abnormal EMG of bulbar region, completely diagnostic for MND. My limb EMGs, have been normal, but yet I have noted atrophy of shoulder blade, inability to lift arm much, weakness in hands and legs. (I have not had an EMG since November of 09) I have had an abnormal single fiber EMG, but do not have MG or myasthenic syndrome. I have very little evidence of UMN damage, and what little signs there are have not progressed, not in my perception, or by my neurologist either. My LMN deterioration continues though. My breathing when last tested was in the 60% range, I need bipap to breathe when laying down, and I have a PEG to help with hydration and nutrition.

My ALS diagnosis officially stands, but, it is felt that I have a MND variant, mostly due to lack of progression of UMN. I will have an EMG sometime in May on my limbs again, concentrating on the shoulder blade and right side of my body. To put the upcoming EMG in perspective, my neurologist last saw me in October, she saw the winged scapula, she noted that it was impossible for me to lift my arm above my head. Did she schedule my EMG for November? December? ... no, its in May. Slow progression is just that (slow).

We had a forum member (JustJ)who was the caregiver of her husband. He eventually was diagnosed by Dr Rothstein at Hopkins with ALS despite clean EMGs. Sadly, his respiratory function, once affected, declined rapidly, and he passed away shortly after diagnosis. But, her husband was the exception to the exception. Its why he ended up at Hopkins.

I am not someone who would ever want to spread mis-information. I don't want to become embroiled in a controversy here over this. But, I felt I needed to say something, because, despite the never ending onslaught of anxious twitching newcomers, or anxious twitching long time members who don't move eventually move on, there needs to be a full spectrum of experiences shared, to help those that truly need the encouragement to continue seeking answers.
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Old 01-03-2012, 10:49 AM #6 (permalink)
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Default Re: clean emg

Hey Rose

Your winged scapula is due to damage to the serratus muscle, which is very difficult to EMG (it is located on the ribs and wraps around and holds the scapula to the ribs), so it doesn't surprise me that it has escaped detection. Furthermore, damage to those muscles can affect the range of motion of your arm. Your breathing problems are most certainly not due to any limb abnormalities and the muscles involved in breathing are also a bit difficult to EMG (did they EMG your breathing muscles?). Your problems and your clean EMG's in your limbs can certainly be explained.

Having said that, your case is unique and I'm glad you are progressing slowly. Are there other unique stories of progression? Of course there are but they are just that . . . unique (and incredibly rare). On top of that, the neuro's in those cases know something is happening and at the very least suspect some type of neurological, muscular or neuromuscular condition.

The worriers on here that have clean clinical exams AND clean EMG's should not be worrying (that's just about all of them). That is why I stepped-in to this thread, because those people are already full of anxiety and a thread like this will have them jumping off of the proverbial cliff. There were simply too many holes in the story presented by Patricia and it was too simplified. Maybe I over-stepped my bounds when I made the accusation of "panic-inducing" rhetoric but I still stand by everything else I said.

Bottom line: if there are lower motor neuron signs and symptoms in affected areas and those areas are reliably EMG'd, the EMG will detect it. The EMG is incredibly sensitive to the electrical abnormalities that occur . . . likened to seismographs that can pick-up even the smallest of earthquakes thousands of miles away. There is nothing wrong with discussion but the full story must be presented in order for that discussion to have merit and to promote knowledge.

Last edited by wright : 01-03-2012 at 11:11 AM
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Old 01-03-2012, 10:55 AM #7 (permalink)
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Default Re: clean emg

Oh man. I've had normal clinical exams and normal EMGs and was diagnosed with MG. I've had symptoms for 2 years. I agree with Wright because now I'm worried again. My MG meds aren't working and how do I know the SFEMG isn't diagnostic of something else?
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Old 01-03-2012, 11:04 AM #8 (permalink)
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Default Re: clean emg

horevo keep in mind what Rose told you. Sometimes it takes a bit of time to get your dosage adjusted properly.
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Old 01-03-2012, 11:08 AM #9 (permalink)
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Default Re: clean emg

Horevo,

You just answered your own question. You had normal clinical exams.

Wright,

Thank you for the explanation. It is really appreciated. (and makes sense) For the most point I don't dwell on the question much. I have come to accept that although not treatable, my progression is slow, and should continue to be. No one gets out of here alive, you know.

I understood that for me to respond to this thread could help stir up controversy. I sincerely hope it doesn't morph into widespread panic. I wrote this, as Wright pointed out, for those who have abnormal clinical exams, and under the care of neurologists who suspect underlying neurological or neuromuscular causes.

And, for the worried twitchers out there, let it be known that I continue to have very very few fasciculations. They hardly exist for me. The ones that are there, I observe them, but, I cannot feel them at all.
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Old 01-03-2012, 11:10 AM #10 (permalink)
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Default Re: clean emg

So hjlindley (sorry I know I'm sort of hijacking this thread but...), since we both went to the same ALS specialist and you had clean EMGs, are you saying that Dr Burn still suspected MND despite the clean EMGs right? So, in other words he still knew something was wrong. So I should still be confident in my visit because he made a good diagnosis even though your progression is slow? right?
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Old 01-03-2012, 11:33 AM #11 (permalink)
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Default Re: clean emg

I, like Patricia, were referring to those who have clear signs of motor neuron dysfunction, which absolutely would include abnormal clinical exam.

I have not had even one normal l exam. Despite that fact, I was completely convinced I had systemic scleroderma (because I don't have many wrinkles—talk about laymen not understanding medical terminology and symptoms lol)

Its the whole picture that matters.
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Old 01-03-2012, 11:36 AM #12 (permalink)
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Default Re: clean emg

Horevo keep in mind you have had normal clinical exams along with your clean EMG. Do not start worrying if you have no clinical weakness then you have no need to be concerned about ALS.

Wright you are obviously an expert so I have no desire or need to debate you as I am just a novice and besides that I agree with you. I understand the EL Escorial criteria that has been established and when I read the worrier's posts I try and walk them down that path.

One thing that you stated stuck out for me the most. "reliably emg'd" When I was going through my diagnostic process long before I ever imagined or suspected that the ultimate diagnosis would be ALS, my Orthopedic Dr sent me for an EMG susecting spine / nerve issues etc. He sent me to a local neuro (whom both my wife and I were very unimpressed with) who poked a few muscles in my leg and said that while he found hyperreflexia my EMG was normal. Long story short after seeing a neurosurgeon, having MRI's MRA's, blood tests etc, my original Ortho Dr said you need to get to Emory because we see mostly horses down here and you need a zebra Dr. Anyway when I visited a Neuro who was associated with Emory and had done a fellowship under Dr Glass and he viewed my blood tests, mri's, emg results etc and did a clinical exam he told me he wanted to do another EMG because frankly based on his exam and viewing all the test results that I had already had done (which had been exhaustive) he was questioning the EMG and told me that (as you already know Wright) an EMG is not like an x - ray where you can view any x ray and see the issue. The EMG is only as reliable as the tester.

At that point he said he wanted to do his own emg and that I should bring my wife with me because he suspected MND and when I pushed him for more he told me it was a strong potential that it is ALS. That was the first time I considered ALS as what I had. It was also the first time I posted on this forum. You know what I was told? (not from you) I was told I had a clean EMG so I did not have ALS and no need to worry and they could not understand why my Dr would suggest that. We all know the rest of the story as obviously I have ALS.

Anyway that is probably why I am patient with the more "rational" people who post on the Do I have ALS portion of the forum? Of course the quacks are easy to spot and immediately deserve tough love. It is also why I recommend people to see a Neuro at an ALS clinic or at least specializes in MND etc.

Again Wright everything you said is correct (not that you need my affirmation as you are an expert, I am just stating that I am not arguing with you) I am just pointing out the delicate fact that not all EMG's or more precisely EMG testers are created equally. So the key is have a reliable one by someone who is a specialist.

Then it is much safer to say Clean EMG = No ALS

Sorry for such a long and rambling post.

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Old 01-03-2012, 11:38 AM #13 (permalink)
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Default Re: clean emg

Also, even though I am one of those dumb "worriers" .. The ALS specialist at UVA told me that, 1/3 of all neurological visits end up to be anxiety related, so hopefully that might help ease the worry for someone else. Even though this thread starter scared the crap out of me, again.
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Old 01-03-2012, 11:42 AM #14 (permalink)
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Default Re: clean emg

I understand. It's just hard when you have symptoms and others can't see them. There are days when I want to cut my right arm off because it doesn't cooperate. Lately it's been everyday. And this nasal speech is just being noticed by my doctors. And the difficulty speaking or slurred as you will, is so subtle with me that others havent picked up on it. But u are correct, a normal clinical exam is a great thing. Not to mention the incessant twitching I've had for 2 years. .....to be honest, this is the symptom that, accompanied by my muscle weakness and fatigue and bulbar symptoms still has me worried about the EMG, only because it's not an MG symptom. I have read that neuro myotoni can accompany MG so maybe that's where the twitching comes from. Or maybe it's the cancer.... I'm a mess.. LOL
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Old 01-03-2012, 12:37 PM #15 (permalink)
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Default Re: clean emg

Wow, I echo the comments about the first post kind of scaring the crap out of me, which it did, though I doubt that was the intention. Thank you Wright (and others) for explaining/elaborating a little further. As my "concerns" have always been perceived weakness and fasciculations, I think I'm going to go ahead and stay relied that my clean EMG results were accurate.
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