Welcome to Just Answer. I am an Adult Neurologist and was contacted to answer your question.
Thank you for the quick reply. What is your opinion about the cause of my twitching?
I do see MS patients with fasciculations
it is thought to be a peripheral nerve response
the problem is maybe related to the change between central and peripheral myelin at the spinal cord/root interface
at least that is what we are told may be a cause of twitching
if you have spinal cord lesions
are they diffuse? or within a certain dermatome?
there is also a condition called myokymia
have you heard of that?
it is seen in patients with MS
it is a "rapid" rolling wave of activity, that runs under the skin
rather than diffuse isolated twitches
According to the MS Specialist the MRI revealed definitely one but maybe two cord lesions. I don't recall the exact location(s). I also have a brainstem lesion.
Not so much rolling more like a quick up and down
well you could be having these. but the term used to cause discreet fasciculations is "meningoradiculitis"
I am very concerned about ALS since, as I am sure you know, that is invariably what surfaces when you search muscle twitching online. Besides a positive Babinski, which is common with MS, my physical exam was normal. No strength issues at all. The Dr. never even suggested an EMG.
you are familiar with BFS as well correct?
benign fasciculation syndrome
you can determine between BFS and ALS with an emg exam
but you should have weakness in ALS
with MS, you can have spasticity, so that becomes more difficult
He never recommended EMG and said I don't have ALS upon examination. There was no clinical weakness. I have had this twitching since DX 3 months ago. If ALS was the cause, would I not have weakness by now? Do the fascivulations follow weakness or can they precede weakness? I believe I do have spasticity. For example, the top part of my left calf is often tight. Not painful just tight. That is the calf that twitches most often. Can this twitching be a symptom of spasticity?
but an EMG to look at the morphology of your motor unit potentials in the muscle
fasciculations precede weakness in ALS
twitching is a finding of lower motor neuron hyperexcitability
but as mentioned that can come in MS as well
I though MS affected only upper motor neurons?
that is not true, you can have a peripheral neuropathy in MS as well, it is much less common
but fasciculations come from the interface of central and peripheral myelin
so it is a loss of inhibition to the motor unit in the spinal cord
that causes a hyperexcitability
Now your first statement has me interested. What I believe was my first symptom was bilateral foot numbness in June 2012. Would this be an example of peripheral neuropathy?
numbness can be peripheral or centra
it depends on the distribution,
if it follows a specific nerve
or is more wide based
also, if bilateral at onset,
it can me within the spinal cord, instead of a single nerve
hard to say from here
it would depend on your examination
with a pin exam to determine if this was peripheral or central
in MS, peripheral nerve symptoms are a late finding
not usually seen early in the disease, so I suspect your sensory loss was the spinal cord or brainstem lesion
I hope I was able to answer you question,
Dr Frank T
To recap, using the information with which I have provided you, do you believe the most likely cause of the twitching is my MS?
the most likely cause is BFS
the incidence is 1:200 or so
in men maybe 1:80
MS is 1:1500
and fasciculations that are diffuse, not following a single dermatome, in the area of a spinal lesion
is unlikely to be from MS alone
so you really could have two things here
to determine the reason, you get the EMG
the EMG will show normal motor units in BFS
in ALS, or other motor neuron diseases, you will have changes in Motor unit morphology
in MS, you will see hyper-recruitment of motor units to suggest an upper motor neuron lesion
but the units themselves will be normal
So now you are saying it is unlikely MS is the cause?
for you, MS could be a reason for having fasciculations, because you know you have MS
for everyone else, the most common reason for fasciculations in BFS
that is what I was saying
but you said your fascics were widespread
and that is more consistent with BFS
do you have them on your eyelids?
yes - all the time!!!!!
just the left eyelid
that is more consistent with BFS
do you think ALS is unlikely?
muscles with a very low ratio of nerve endings to muscle celss
ALS is 1:150,000
so we don't win the lottery, and we don't have ALS when we are a young male with twitching
I failed to mention my vitamin d is 17 and b12 is low.
I see, well that might relate to the MS, have you discussed that with your neurologist?
yes, he has me on b12 1000 and vitamin D 2000IU. Those doses see light based on what I've read. It seems, especially with the vitamin D, it would take much more to get those numbers back to normal which I understand for a male is 50-70.
vitamin D levels are difficult to stabilize, you want to be careful in loading this up to a normal range
it can be toxic if given too quickly, that is why he is going slow with you
That is what he said. So I should stick with 2000IU? How long will it take to get back to normal? Can this be contributing to the twitching?
I would stay at 2000IU, and recheck a level in 3 months, This does not effect twiching, unless your calcium levels are depleted???? abnormalities in calcium, magnesium, and potassium are to be considered
I hope I was able to answer your questions. Please rate my service if satisfied. good luck to you
I have noticed the twitches aren't as generalized as I thought. They appear to be more concentrated to my calves, especially the left leg which is where I've experienced the tight calf muscle. Given the past episode of bilateral foot numbness and now the muscle twitching can this be from the same spinal lesion?
One final observation. I suspect lesions down in the area you suggest for a few reasons:
1. The bilateral foot numbness
2. Retrograde ejaculation for a brief period during the same time
3. A wedgie like feeling (sorry, no better way to describe it) also at that time.
Additionally, this weekend I payed closer attention to my calves and noticed the wavy, rolling action you called Myokymia. This was not like the quick pulse-like ones I felt before in various parts of my body. I thought Myokymia only happens in the eyelid?
Is this a common area for someone with MS to have a lesion?
Last question. At the time of Dx I had about 5 brain lesions and at least one (but probably two) spinal lesions. The MS specialist treating me unequivocally classified me as having RRMS. Can this be done at onset or does a patient really need to be followed for a period of time before that label is given?
I wanted to give you a quick update. I had my quarterly exam today by the MS specialist. We discussed the twitching. He noticed them only in my calves. He referred back to my prior scans and noticed a lesion at the T12/L1 level. He said this is the only likely causing the "calf business". Do you agree a lesion in that location could be responsible? He also said it's nothing more sinister and my physical exam has actually improved since the last time, i.e., babinksi and Lhermitte's signs have disappeared. The scans do not cover the L5/S1 levels you discussed previously.