Question about EMG.

[momof3boys]

Good afternoon. I have read the information on this site and it’s very helpful. I started with random fasiculations about 6 weeks ago. Went down the rabbit hole with Dr. Google which has caused significant anxiety. Fasiculations are now all over my body and all day long. Worse when lying in bed. Lower are pretty constant and it ping pongs around my shoulders, back, biceps, thighs, stomach, buttocks….pretty much everywhere. Happening in several places as I sit here. No muscle weakness. I workout regularly and lift weights. No other symptoms. I see a neuro next week. I had chalked this up to anxiety and benign fasiculations because my family doctor said ALS starts with weakness not twitching and I am extremely anxious but I’m nervous about getting an EMG if he orders one because won’t it come back abnormal with fasiculations if I can literally see them everywhere? And won’t that point to ALS if it shows fasiculations in many muscles? I guess I’m maybe not understanding the test. Is it still a normal test if it just shows fasiculations?

 

[Nikki J]

Correct you do not understand the test. First , emgs can be abnormal in many ways, many abnormalities are benign and that would certainly include just simple fasciculations.

Secondly, an ALS EMG has a very specific pattern with multiple abnormalities required to meet the criteria. Even then there are often other things that will need to be ruled out before a diagnosis is made.

Thirdly the emg can be abnormal and indicate a disease that is neither benign nor ALS

Fourthly, twitching such as yours may not even show on emg even if you are twitching when it is done. Also, if you are not twitching at the time it does not invalidate the emg.

Lastly,ALS criteria include not just an emg they have specific physical exam findings. You need both.

 

[momof3boys]

Thank you for your reply and straightforward answer. It was hard to get an understanding from other sources but this helps alot.

 

[momof3boys]

So my neurologist scheduled an EMG for this Wednesday and said that he is pretty sure I don't have ALS but said the EMG will tell him 100%. I have constant calve twitching and random other twitches. No weakness or atrophy. I was looking forward to getting an answer and hoping to put my anxiety to rest but I saw an article about the actor Aaron Lazar who was diagnosed with ALS a few years ago. Twitching was his only symptom for 6 months and he had a clean EMG and was told by 3 different neuros that he had BFS. Fast forward 6 months and he gets foot drop, second EMG indicates a problem, and he is diagnosed with ALS a month later. I thought a clean EMG (with only twitching and no other symptoms) = no ALS, in line with what my neuro said but now I'm skeptical if I can move on even if my test is good. It's confusing.

 

[Nikki J]

The twitch first group is very small and consists primarily of those with genetic als and also older men. Aaron was a little on the young side since I believe he was in his mid forties but you are not male. I don’t know your age. I would guess you do not have multiple relatives who had ALS

The constellation of twitching plus normal emg plus normal exam turning out to be als is very rare in everyone. The stories you read about normal emgs tend to be either the above groups or people whose clinical exams were not normal and showed significant upper motor neuron signs which is why we say normal emg AND normal clinical exam means no als. I think your exam must have been normal if the doctor said what you say.

I am really sorry you will live in fear

 

[momof3boys]

Thank you. I am 53 with no als relatives. Thinking the twitching might even be from hormones since I’m still in perimenopause. It’s constant in my calves. Like popcorn. Small visible ticks in both legs that go from side to side and top to bottom of calves. I can just sit and watch. So weird. The other areas are random….shoulder, arm, back….

 

[momof3boys]

Had my EMG yesterday and a clinical exam by the neuro. He didn't see anything concerning on the clinical exam and he said my EMG showed zero concerns for ALS. He said I had benign fasciculation syndrome. I mentioned about some people having a clean EMG and then later developing the disease and he said he agreed that ALS can start slowly but with fasciculations in both legs etc. something would show on the EMG so he's 100% certain I don't have ALS.

 

[lgelb]

Thanks for circling back, with all best wishes for your continued good health. I advise you to stay away from BFS sites that will only fuel your fears, with no reason. Live your best life with your family, the life without weakness that others here cannot.

 

[momof3boys]

God bless all of you….dealing with your own real struggles yet taking the time on a daily basis to allay the fears of so many of us (many of which we’ve blown out of proportion….myself included). Your strength, and compassion is a true inspiration and should be a lesson to everyone watching this forum. You have definitely opened my eyes to the fact that I’m not living my life to the fullest. I’ve read so many posts similar to mine. That is why I posted my positive results. For those future people with anxiety and twitching (with no other symptoms) who find themselves combing through these posts….anxiety can have an enormous impact on your body and your life….be grateful for every day and just live your best life….stop looking for the worst and appreciate what you have.