Questions About Unclear EMG Results

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garymills

Well-known member
Pam,

There are many stories just like the one you describe. The key is that we don't know all the details of her emg. You say it was negative, but what does that mean? It could mean that it wasn't "normal", but not clearly indicative of als. In those cases, patients are usually told that a wait and see approach is necessary. I would be very surprised if she had an absolutely normal emg, and if she did, you would be reading her story in medical journals instead of magazines. Finally, the fact that she continued to get weaker and weaker over a period of a year is as important as any emg. Weakness as we all know is the hallmark of als. I can say with absolute certainty that once weakness began, she wouldn't/couldn't have had a normal emg (because of the mechanisms that cause weakness in als). So the year time frame from her first emg and the second is irrelevant. It wouldn't have taken a year for her emg to show "evidence" of something terribly wrong, she simply chose to wait that long.

Be careful reading stories like the one you describe. While they are really sad and compelling, many times they are incomplete descriptions of the story. As all of us know on this board, the devil is in the details. And you will have a hard time finding a group that is more into details than this group, except when we read a story about someone else that scares us. Take a step back and look at the story in a whole and really see if there are any holes/omissions.

Take care,

Gary
 
Chin,

Gary couldn't have said it any better. "Normal" may have meant "inconclusive" not clean. In any event, she COULD NOT excercise with her legs (I think I know the story of which you mention). She got PROGRESSIVELY weaker. In fact, if it is the same woman, before she got her official diagnosis she could not hop on one foot or do jumping jacks. Even if we are talking of two different cases, the point is that profound weakness is the presenting symptom. When I was 3 months into the twitching, I has an emg done by a NM specialist who runs the ALS clinic at the Univ. of Pgh. Before he did the emg he said he expected everything to be normal. I asked "Why, because I am a female? Because I am only 34?" He laughed and said "because your only symptom is fascics. " He then went on to say that if a young person with fascics only and a normal neuro exam went on to be diagnosed with ALS it would be a medical anomaly. Hope that story is helpful. I know how unsettling it can be to have your muscles do something you have no control over. I know it is easy to second guess and doubt. But, after 5 months with no signs of weakness you need to accept your diagnosis. Maybe a good place to start would be to stay away from ALS stories and web sites. In the beginning I used to read those too and I would cry my eyes out. I would cry for me because I thought that was my fate and I would cry for those poor people afflicted with such a horrible disease. Stay at this site were you can read reassuring stories about people who have twitched for months or years and are still ok.

Jenn
 
Don't think it's too early to get an EMG once you noticed the twitching (symptom). A Clevelanc Clinic neuro excerpt put it in the context of the common cold.....

"You get a cold and you're sneezing, coughing, have a soar throat and a fever. These are symptoms of a virus that causes the common cold. BEFORE those symptoms become noticeable, the virus must be set in and do some damage BEFORE sx become noticeable. ALS, or any other disease works the same way. So, a NORMAL NEURO EXAM + CLEAN EMG means there is no evidence that your UMN's and LMN's are dying." He goes on to say "This criteria was drafted and agreed upon by the members of the World Federation of Neurology (WFN)."

With twitching, irregardless of the timeframe between when it started and your EMG, I would think, with that symptom, something else sinister would have shown up. The neuro went on to say that he had twitching and went for EMG 3 weeks into twitching and had normal EMG. Went on to say he had a follow-up, not for any other reason than piece of mind, 4 months later and still everything normal.

Rest assured and as mentioned earlier in these posts, don't always believe everything you read, as you find out later, alot is taken out of context.

I, too, have to bring myself down from the worry and anxiety that continues to linger, but hope this helps ease your mind a bit. ;)
 
That story, even if it were true, has absolutely no importance here, because of one thing:

She did not TWITCH.

That is the critical element people forget when they read about these stories. Anyway, I highly suspect this story is grossly incomplete because neuros do NOT give EMGs for a tingling in the arm.

The reassurance we rely on, that an EMG will pick up ALS in our cases, is because we twitch. If someone twitches because of ALS, it means nerves have already died and that will be picked up by EMG. In cases of ALS without twitching, it's harder to tell because it's possible (but even then rare) for the EMG to sample unaffected muscles and come up with nothing. But when you twitch profusely, that would mean the muscles are well into the process if it's ALS and it would show up on EMG. The Mayo study only looked at people who twitched.

This should not worry anyone who twitches even a little bit.
 
Well, EMG can be given to diagnose pinched nerves that can give symptoms of numbness, tingling and shooting pains. On EMG (sometimes MRI is indicated for disc problems) they will show up with denervation, fibrillations and fasciculations - these are the same EMG signs as in a disease with origins in spinal roots such as motor neurons.

Also, there is NO WAY an EMG can be termed as normal with even slight abnormalities. This is just never done so normal means clean.

However, having said that I do not think that her EMG can be normal and if it was then the physical findings did not correlate with the EMG. "Keep my chin up" did not give enough details here.

However, if someone had twitching then it would probably not produce a 100% normal EMG but there is another suspicious thing about this story that she was not able to exercise - means there were symptoms in the legs and tingling in the arm - so the process was widespread already. There may have been delay in diagnosis but that does not mean no neurological process was going on.

Finally, sometimes physicians can make mistakes - EMG is a highly operator dependent test. totaltwirls : if the story you are talking about is right then that women had weakness and UMN (was off balance after 4-5 months) signs - could not exercise since legs would not allow and could not jump etc... but somehow I cannot imagine that you are talking about the same story since that one was an obvious case although the final diagnosis came after 1 year.
 
"Keep My Chin Up" :

I think you have a very big anxiety problem. I read your initials posts. You have always questioned EMGs and doctors judgement. Seems like now seem to be focussing on searching articles and stories where the validity of EMG can be questioned. Maybe you should frankly talk about this issue with your GP. Not trying to chide you but trying to give helpful advice as a family member would.
 
No, my story is not the same one. It is simply an excerpt from a neurological site that I put there to basically give reassurance that something would have shown up questionable on the EMG as symptoms were present. Did not read the story referred to at all. I was actually quoting a neurologist on a neuromuscular forum who indicated the reassurance of the fact that it's never to early to get an EMG, especially when presenting with symptoms because they are what is happening after the sinister stuff has already begun, if there is anything sinister going on.
 
Bless,

I think you were referring to the story I read as being the same as the one that chin referenced. Actually, it is very similar. In the story I read the patient claimed she initially had a normal emg. She also had fascics and weakness. You are right, in hindsight anyway, it seemed like an obvious diagnosis. However, it took a year. Apparently she bounced back and forth between an orthopedic doc and the neuro. She also had some disc problems that they thought were contributing to her weakness. If Chin and I are not talking of the same story, they are similar in that the patient claimed normal emg, had weakness, and took one year for diagnosis. The point I was trying to make however was that weakness was present at the onset. And I mean major weakness. Apparently at the ortho. appt. she could not do a jumping jack or hop on one leg and it was the ortho. who suggested als as a possibility. At that point the second emg contibuted to the ALS diagnosis. The only reason I mentioned the story is to once again remind that weakness is obvious and apparent from the get go of a serious disease.

Jenn
 
Anyway, I probably missed the more important point--the BFS dx is based on a clean EMG, AND a clean clinical exam. Nobody should be relying on the EMG alone for a dx if there are other symptoms. A competent neuro would not dx BFS if there are clinical signs of something more serious.

The Mayo study does not establish that a clean EMG means you're in the clear--it says a clean clinical exam is required as well (as far as we know, it may be the more important of the two qualifications).

That is another reason why this story should not be a concern to twitchers.
 
This is the first time this site has actually created more worry for me. For those who experience some weakness (although not picked up in a neuro exam), the thought of the emg not picking up the bad stuff is a very frightening thought.
 
Matt,

If anything that story should provide you with reassurance. The woman had profound weakness. She could not excercise with her legs. She could not do a jumping jack or hop on one foot. Can you do a jumping jack? I am sure you can. If you can't, then you might be a bit concerned. As far as the emg goes - the patient said it was normal. Normal may have meant inconclusive, or maybe "not enough at this time to make an als diagnosis". You need to be wary of stories like this because they leave out critical info. like that. Also, if it is the same story I am thinking of, this patient also had disc problems (actually had surgery during this time period) and that could have muddied up the waters in terms of making a diagnosis. The bottom line is that if you do not have weakness you do not have als. If your doctor says you are fine then you are fine. BTW, if you were experiencing weakness it would be picked up on the neuro exam. These specialists are trained to notice weakness, weakness that patients don't even notice they have.

Jenn
 
Thanks Jenn. I suspect one reason BFS is more common in people in the health care industry is that we're around physicians a good bit and recognize them as simply human beings and fallible like the rest of us. I'm not a neurologist and would never suggest being in the same ballpark as their knowledge base, but I know when a part of my body is weak, even if it doesn't show up yet when walking on my toes or heels. Hopefully there's another, less frightening cause for this weakness.
 
I did not want to give this in so much detail but since it has already created a stir, here are some details :

1. The woman noticed tingling as first symptom
2. She felt fascics. going down steps and had feelings of falling
3. Could not exercise when her GP told here to do so
4. Had tendon shortening (achellis tendon I suspect), cramps and loss of balance (this means she would fail Romberg's test) at 3-4 months
5. Could not do hops or jumps in ortho's office

This is basically Gastronemius/Soleus unit weakness which means that she probably could not walk on heals (walking on toes is facilitated by Tibialis Anterior and these are the two muscles that are affected early in the disease).

Bottomline : There was weakness and upper motor neuron signs (being off-balance etc. Also, she may have been told that the EMG was normal but it may not have been (the poor soul was in a small town of Ohio and may not have had access to a competent Neuro). She was finally diagnosed at Cleveland clinic after almost 1.5 years.

Another thing to consider - Cleveland clinic sees over 200 cases each year of this disease and must be doing many more 100's EMGs. They maintain the Mayo study is true for them too. Don't you think if they thought her EMG was normal it would have come in the grand rounds at the clinic and then published !!!

PS : Once again, both EMG and Neuro exam. should be fine. Hope this answers some people's questions. This is all I know.
 
Matt,

There is no reason to worry. The EMG is not a definitive test. For a benign DX you MUST have a clean clinical exam. In that example, that patient never would have come close to getting a BFS dx even if she did twitch.

Don't look to the EMG as a diagnosis machine. It isn't. Its results are open to interpretation. However, couple it with other factors like the clinical exam and you have a very strong diagnosis protocol.

What counts is this--if you pass an EMG and physical, the studies show you're essentially in the clear.

That is the only standard that matters.
 
Yes, although I do not want to second guess here ... but with weakness and fascics. there HAS to be some EMG finding.

Weakness means reduced recruitment. Think about it - how can the recruitment get reduced without any denervation !!!!!!!!!!!!!!!!!!!!!!!!!!!
 
My intention was not to put anybody in an up roar. This womans post was just very concerning to me. A yr. and a half into this then diagnoised. And no I do not know all of her circuimstances just what I read. So once again sorry if I alarmed anyone just wanted advice about that post and how a person can have als that long and not know.

Thank you Pam
 
Pam,

Certainly no need to be sorry. The nasty thing about this whole situation is the unknown. The general consensus I've read on this board is that a clean emg is as close as one can come to certainty. When that's in question it's a bit anxiety-provoking.

Matt
 
i think you meant to write that the up on toes test is for the Gastroc-Soleus and the heel walk is the test for Anterior Tib...since we are getting technical wanted to make sure we are all on the same page....Lynn
 
Pam,

This isn't alarming. I don't mean to sound like a broken record, but the EMG is not the definitive test for ALS (when the concern is about twitching). It must be a clean physical exam... Considering how many neuros don't even bother with an EMG in the presence of fasciculations, I think it's safe to argue that the physical exam is even more important than the EMG.

It just isn't an alarming story.
 

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