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Dr. Frank
Dr. Frank, Board Certified Physician
Category: Neurology
Satisfied Customers: 7201
Experience:  Board certified general Adult Neurologist, with experience in experimental neuroimaging and neurodiagnostics.
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On 5/13/13 I was Dx with RRMS. My presenting symptom was ON.

Customer Question

On 5/13/13 I was Dx with RRMS. My presenting symptom was ON. MRI of the brain and spine confirmed cerebral lesions and cord lesions. Since my Dx I have experienced continuous body wide twitching. They vary in type and location. I've had fast fluttering movements that I don't see, very subtle movements that are only visible and some real thumpers. Besides the left eyelid my legs (calves/around the knees/ and things) appear to be the hotspot. The MS specialist I see rejects the fact it's related. So does most of the official literature. However, there is quite a bit of anecdotal evidence, e.g., many individual accounts of people with MS that complain of the same issue, to suggest this is a fairly frequent occurrence. I realize the text book answer is MS affects the CNS and twitching indicates a problem with the PNS but I would like to know what you have seen in your practice, i.e., whether MSers tend to experience this symptom.
Submitted: 1 year ago.
Category: Neurology
Expert:  Dr. Frank replied 1 year ago.

neuromd2012 :

Welcome to Just Answer. I am an Adult Neurologist and was contacted to answer your question.

Customer:

Thank you for the quick reply. What is your opinion about the cause of my twitching?

neuromd2012 :

hello

neuromd2012 :

I do see MS patients with fasciculations

neuromd2012 :

it is thought to be a peripheral nerve response

neuromd2012 :

the problem is maybe related to the change between central and peripheral myelin at the spinal cord/root interface

neuromd2012 :

at least that is what we are told may be a cause of twitching

neuromd2012 :

if you have spinal cord lesions

neuromd2012 :

are they diffuse? or within a certain dermatome?

neuromd2012 :

there is also a condition called myokymia

neuromd2012 :

have you heard of that?

neuromd2012 :

it is seen in patients with MS

neuromd2012 :

it is a "rapid" rolling wave of activity, that runs under the skin

neuromd2012 :

rather than diffuse isolated twitches

neuromd2012 :

hang on

neuromd2012 :

http://www.medlink.com/medlinkcontent.asp

Customer:

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.

neuromd2012 :

I see

Customer:

Not so much rolling more like a quick up and down

neuromd2012 :

well you could be having these. but the term used to cause discreet fasciculations is "meningoradiculitis"

Customer:

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.

neuromd2012 :

I see

neuromd2012 :

you are familiar with BFS as well correct?

neuromd2012 :

benign fasciculation syndrome

neuromd2012 :

you can determine between BFS and ALS with an emg exam

neuromd2012 :

but you should have weakness in ALS

neuromd2012 :

with MS, you can have spasticity, so that becomes more difficult

Customer:

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?

neuromd2012 :

but an EMG to look at the morphology of your motor unit potentials in the muscle

neuromd2012 :

fasciculations precede weakness in ALS

neuromd2012 :

twitching is a finding of lower motor neuron hyperexcitability

neuromd2012 :

but as mentioned that can come in MS as well

Customer:

I though MS affected only upper motor neurons?

neuromd2012 :

that is not true, you can have a peripheral neuropathy in MS as well, it is much less common

neuromd2012 :

but fasciculations come from the interface of central and peripheral myelin

neuromd2012 :

so it is a loss of inhibition to the motor unit in the spinal cord

neuromd2012 :

that causes a hyperexcitability

Customer:

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?

neuromd2012 :

numbness can be peripheral or centra

neuromd2012 :

central

neuromd2012 :

it depends on the distribution,

neuromd2012 :

if it follows a specific nerve

neuromd2012 :

or is more wide based

neuromd2012 :

also, if bilateral at onset,

neuromd2012 :

it can me within the spinal cord, instead of a single nerve

neuromd2012 :

hard to say from here

neuromd2012 :

it would depend on your examination

neuromd2012 :

with a pin exam to determine if this was peripheral or central

neuromd2012 :

in MS, peripheral nerve symptoms are a late finding

neuromd2012 :

not usually seen early in the disease, so I suspect your sensory loss was the spinal cord or brainstem lesion

neuromd2012 :

from probability

neuromd2012 :

I hope I was able to answer you question,

neuromd2012 :

Dr Frank T

Customer:

To recap, using the information with which I have provided you, do you believe the most likely cause of the twitching is my MS?

neuromd2012 :

the most likely cause is BFS

neuromd2012 :

for fasciculations

neuromd2012 :

the incidence is 1:200 or so

neuromd2012 :

in men maybe 1:80

neuromd2012 :

MS is 1:1500

neuromd2012 :

and fasciculations that are diffuse, not following a single dermatome, in the area of a spinal lesion

neuromd2012 :

for example

neuromd2012 :

is unlikely to be from MS alone

neuromd2012 :

so you really could have two things here

neuromd2012 :

to determine the reason, you get the EMG

neuromd2012 :

the EMG will show normal motor units in BFS

neuromd2012 :

in ALS, or other motor neuron diseases, you will have changes in Motor unit morphology

neuromd2012 :

in MS, you will see hyper-recruitment of motor units to suggest an upper motor neuron lesion

neuromd2012 :

but the units themselves will be normal

Customer:

So now you are saying it is unlikely MS is the cause?

neuromd2012 :

for you, MS could be a reason for having fasciculations, because you know you have MS

neuromd2012 :

for everyone else, the most common reason for fasciculations in BFS

neuromd2012 :

that is what I was saying

neuromd2012 :

but you said your fascics were widespread

neuromd2012 :

and that is more consistent with BFS

neuromd2012 :

understand?

neuromd2012 :

one question

neuromd2012 :

do you have them on your eyelids?

Customer:

yes - all the time!!!!!

Customer:

just the left eyelid

neuromd2012 :

ok

neuromd2012 :

that is more consistent with BFS

Customer:

do you think ALS is unlikely?

neuromd2012 :

muscles with a very low ratio of nerve endings to muscle celss

neuromd2012 :

cells

neuromd2012 :

yes

neuromd2012 :

ALS is 1:150,000

neuromd2012 :

or more

neuromd2012 :

so we don't win the lottery, and we don't have ALS when we are a young male with twitching

Customer:

I failed to mention my vitamin d is 17 and b12 is low.

neuromd2012 :

I see, well that might relate to the MS, have you discussed that with your neurologist?

Customer:

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.

neuromd2012 :

vitamin D levels are difficult to stabilize, you want to be careful in loading this up to a normal range

neuromd2012 :

it can be toxic if given too quickly, that is why he is going slow with you

Customer:

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?

neuromd2012 :

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

neuromd2012 :

I hope I was able to answer your questions. Please rate my service if satisfied. good luck to you

neuromd2012 :

Dr Frank T

Dr. Frank, Board Certified Physician
Category: Neurology
Satisfied Customers: 7201
Experience: Board certified general Adult Neurologist, with experience in experimental neuroimaging and neurodiagnostics.
Dr. Frank and other Neurology Specialists are ready to help you
Expert:  Dr. Frank replied 1 year ago.
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Customer: replied 1 year ago.

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?

Expert:  Dr. Frank replied 1 year ago.
Hello again. Yes I believe it could, but I would have to see your scan. The concept is that the spinal lesion covers a certain "myotome", it changes the upper motor neuron imput to the motor neurons in the spinal cord over a certain level, which would be the L5/S1 level. Your cord lesion would be seen on the Lumbar MRI? at the L1/2 vertebral level.
Customer: replied 1 year ago.

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?


 

Expert:  Dr. Frank replied 1 year ago.
Hi. Myokymia can be from interspinal lesions, so you could have a lumbar lesion, it would be in the area of the conus medularis, the area on the end of the spinal cord, given your symptoms.

Myokymia can come from muscle diseases as well, so it can effect the fine muscles of the face, (facial myokymia). Also in Neuromuscular disorders like stiff person syndrome.
Customer: replied 1 year ago.

Is this a common area for someone with MS to have a lesion?

Expert:  Dr. Frank replied 1 year ago.
There is really nothing "common" when describing MS patients, they really present differently. Spinal cord lesions in general are more rare, in primary or secondarily progressive MS, the overall number of lesions seen on routine MRI is less, and there is a higher percentage of spinal cord lesions. Also conditions like NMO (neuromyelitis optica)but you also get optic nerve changes bilaterally in that condition.
Customer: replied 1 year ago.

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?

Expert:  Dr. Frank replied 1 year ago.
A patient has to be followed to get the specific diagnosis of RRMS.
Customer: replied 1 year ago.

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.

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