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Teedot

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Hi -

Beginning of September I started getting very noticeable calf cramping - very sudden. When massaging it, I noticed a very noticeable twitch in the calf. A little alarmed, I looked further and noticed both feet, calves and thighs showed the same type of fascination - nearly 24/7.

My doc (after witnessing it) did extensive blood work for Thyroid, Diabetes and Electrolytes - all came back normal. I was referred to a neurologist who believed it was benign but sent me for an EMG/NCV.

My EMG was done by a tech (not a neurologist as he was not able to perform it) 2 weeks into the twitching and on both legs (5 needles each and 4 different nerve roots) my Lumbar Paraspinal (upper, middle and upper) and for upper body he did Deltoid, bicep and Masseter muscle on both sides. The study came back clean (normal insertion, no Fibs, no Psw ) and everything else checked out.

I was greatly reassured but since then, the twitching has gotten worse and I now have roving ones in my arms and shoulders and my lower abdomen, both visible but 75-80% still happening in my legs. My legs are heavy and short walks (from my parking spot to the office) make them very fatigued. I expressed my worries to my neuro last week and asked him if it is possible that the emg would have been done too early.

He said he isn't extremely familiar with the topic and is sending me for a repeat one (despite having a normal clinical exam) - solely based on the (very visible) and constant fascinations. I was hoping to be immediately reassured by his visit but the fact he is sending me on another one may indicate he has worries. He did say I do not fit the age category (I am 36) and did additional blood work for both ferritin and CK levels (which both came back in the low range of normal) - which he claims points away from ALS.

I have been reading up on the BFS possibility but the causes don't resonate with me (I don't drink alcohol, coffee or am on any Rx medications). So perhaps the novel I am laying out here could be summarized in one sentence:

Could I simply have gone in too early (2 weeks in) to have this EMG done or do you believe that once fascinations are visible, there should be sufficient damage done to show an abnormality on the EMG?
 

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Nikki J

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Please refer to the sticky which you should have read which specifically addresses this question.
No clinical weakness plus widespread twitching does not sound like ALS. You do not have to have those risk factors to have bfs
 

Teedot

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I did, and my apologies for posting after all.

I was not sure if ALS includes the precursor symptoms (which is the stage I don't want to be in) or ALS once diagnosed (based on a number of criteria). When I see "EMGs cannot be done too early. 70% of a nerves fibers die before you feel weakness." and ". Therefore a weak or atrophied muscle due to ALS will absolutely, positively show up on EMG. Clean EMG = No ALS" - does that mean that would include those initial symptoms (such as twitching in a subset people)?
 

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Teedot
Twitching can't really be called an initial symptom, it can be caused by so many different things that if present on its own it's shouldn't make you jump to the conclusion that you might have Mnd.
I had no twitching at all until sometime after my EMG, after clinical weakness, after atrophy. I know people who twitch who don't have mnd. I am sure it's unpleasant for you an I hope that your Doctor can find a cause and a solution for you.

good luck

Wendy x
 

Teedot

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Thank you kindly - both. I appreciate the feedback and have made a donation to the site, I am sure it's a great resource for many.

I have another EMG scheduled and I hope to put these worries to rest.
 

Teedot

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I had my emg and was just told it was normal. At the same time he is referring me to mc master in Hamilton.

During the exam, at the point I was asked to push my knee into the bed, he said "strong waves" to the technician that was assisting him. I immediately asked if that was bad. He said it wasn't but was because I am young and have strong muscle there. He went on to say he only said that so it can be noted in the report.

That one sentence has me scared though. Did he mean sharp waves? If he did, he would not have been able to tell me he didn't see anything or that the exam was normal though - right?

I will need to wait a week for the report I was told.
 
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Nikki J

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If he had seen psw's that would have been an abnormality yes ( though isolated psw's would still not equal ALS).
You have had 2 normal emgs, a normal clinical exam and your only symptom is twitching? I think your neuro is being amazingly aggressive to refer you out
 

Teedot

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Correct.

He said at the end he didn't see anything but only did my legs (5 needles in my right leg, 2 in the left) but that he can visually see the twitches. He said he doesn't know why they didn't show on the emg. When I asked if this excludes the possibility of having ALS he said there is more to it than an EMG.

He isn't my neuro, he was the doc doing the exam. He is referring me to a clinic specialized in it.

Do you believe there is no need?

Does a strong muscle result in a strong wave?
 

Nikki J

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The EMG is indeed only a tool but you apparently have no upper or lower motor neuron signs on exam. It is true that an emg result needs to be put into context by the treating clinician. It is not the job of the EMG doctor to do anything other than perform the test and give the results. That said normal is normal and you were tested twice in an area with symptoms within a month or so ( unusual in and of itself. Intervals if they have reason to be worried (abnormal exam and or abnormal but nondiagnostic first emg) tend to be 3-6 months

The he doing the referring is your neuro not the emg neuro? He apparently is doing what he thinks right it sounds as if he knows little about mnd given the comment about emgs you initially reported. I certainly would not worry though. Given all your good results ( exam and 2 normal emgs) you should be thrilled. Come back after your referral and tell us the followup but in the meantime go live your life as I truly believe you are worrying about nothing
 

Teedot

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Thank you Nikki.

The EMG doc (of today) said he is making the recommendation to my own doc to refer me. It's Canada, he will. Having said that, do you have any idea or hypothesis why my twitches are clearly seen but never show on an emg? It is just so puzzling.
 

Nikki J

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Not unusual not to see twitches on EMG and sometimes they can see ones that are not felt/ seen. It just is. But since twitches on an EMG are not worrisome it does not matter. Now really stop worrying and enjoy life. Think of the referral as a formality
 

Teedot

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I wanted to run something by you one more time if you don't mind. I have a persistent tremble and shaking feeling for in my shoulders and neck but neither are visible. More internal. Is that a symptom at all?
 

Nikki J

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Many DIHALS have described something similar. None have turned into PALS. Whatever it is , not ALS. Please. Enough. Time to forget about this and live your life. Come back after your referral visit to report but no more in the meantime ok?
 

Teedot

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I met with my doc who put in the referral - the reason I was referred was due to “long volitional potentials” on vastus medialis.

I googled this to bits and pieces but I am not finding out what this even means?
 

Nikki J

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You should have asked the doctor. Have you seen this written? I have never heard it phrased that way ( is it translated from French?) but wonder if they are talking about large MUPs on voluntary muscle contraction. Fairly frequently reported here and never seem to come to anything in fact often go away. But I am totally guessing and don't understand why you immediately did not ask what is that and why does it matter?
Still advise you to live your life and not worry.
 
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