twiching

[ayan ray]

thanks for providing this wonderful service. It is a great help to lay people like us.
Well my problem mignt not be a problem at all. I experience this strange twiching of muscles. It is not frequent, it is infrequent actually. Sometimes they don't happen for monthes, sometimes they happen almost every day. Any part of the body can twich e.g. the eyelids, the fingers or the calf muscles. Is it a sign of something more serious? Do I need to get a EMG done? Is there any chance it might lead to anything more serious like ALS?

[CCF Neuro[P] MD,RPS]

Dear Ayan Ray:

Although not common, there exists a condition of benign fasciculations, or muscle twitches.  It can occur without a knowledge of what induced them or in about 30% they follow a viral illness.  They cause not physical damage, but psychologically they can be un-nerving (no pun intended).  The can reoccur, they are increased by anxiety or fatigue.  They occur in an uncommon disease ALS.  However, in ALS there is always muscle weakness and loss associated with fasciculations.  If you have no muscle weakness with loss of muscle you do not have ALS.  Fasciculations can also occur in some types of muscle diseases, but here again, there would be muscle weakness and other changes that would be evident.

I would recommend seeing a neurologist just to ease your mind and be able to have someone examine you and tell you that what I think is going on is true.

Sincerely,

CCF Neuro MD

[L.]

Since the topic in this post is ALS, I have some questions.  My husband has been in the care of John's Hopkins neurologist, ENT, speech/lang. clinician for several months now.  Blood work, MRI, EMG, swallowing study, larygoscope to examine vocal chords all done.  Significant slurring of speech is the main symptom, but with no noticeable weakness anywhere.  Neurologist notes "briskness" in reflexes, but bloodwork, EMG all "normal".  ENT exam indicates slight assymetry, but not significant.  They will not rule out ALS or MG at this point, but are fairly stumped as to what is causing the speech difficulties. Empirical med. trial being done with Mestinon and follow up studies will probably be conducted in a few months. If Mestinon doesn't do anything, they may do a trial with rilutek.

I would appreciate a reaction or any additional thoughts on the matter.  In particular,are there any other tests that you would order in such a situation.  Just interested in another perspective.

Thanks.  This service is invaluable!!!

[CCF Neuro[P] MD, RPS]

Dear L:

Sorry to hear about your husband. Before I treated your husband I would chech for acetyl choline receptor antibodies (binding, blocking, and modulating).  If these are positive then MG is the diagnosis.  If these are negative, then your in a bind.  There are fairly strict criteria for ALS diagnosis by EMG and sometimes a patient may have early ALS without the EMG confirmation.  Usually, there is something on physical exam to tip the neurologist toward ALS or not.  There are somethings that take time to fully become expressed so we can diagnose the problem.  Without seeing your husband it is difficult for me to say.  Sorry, I'm not much help.

Sincerely,

CCF Neuro MD

[L.]

Thanks for the input.  We are in a bind.  The ACH antibodies were negative.  All blood tests done were normal.  He has had EMG, swallowing study, vocal chord exam.  We are in the process of med trials.  My husband's case has been presented at the "grand rounds" there at Hopkins and no stones are being left unturned.  Would a spinal tap tell us anything?  Chest CT to check for nerve issues around the vocal chords? Our next step will be a med trial with prednisone.  Maybe rilutek after that, depending on the outcome.  I think the MG and ALS are the top contenders at this point. Of course,it could also be caused by some viral infection that has damaged something affecting his speech.  I guess if that is the case we will never know.

Are there any additional websites you are aware of that might provide me additional information on causes of speech problems?  I have gone to the ALS Association, Muscular Distrophy Assoc.'s neuromuscular pages, and NIH pages.  

Thank you for your reply.  I appreciate any additional information I can get.  Again, this service is invaluable...thanks.

[CCF Neuro[P] MD, RPS]

Dear L:

Without antibodies the diagnosis of MG is really remoted, especially without the decrease in amplitude on repeated firing of the nerve on EMG.  If there are signs of bulbar dysfunction without EMG changes, then I would suspect the diagnosis of ALS.  But in medicine, one never says never.  Sorry I wasn't more help.  You have hit the major sites I would have recommended.

Sincerely,

CCF Neuro MD

[L. - thank you for continued response ;-]

Thank you for the feedback.  Our neurologist has a gut level suspicion about ALS as well.  However, nothing is really showing up.  Based on your experiences, how long might it take for EMG to show what is needed to confirm the diagnosis, if indeed that is what it is?  His speech appears to be the only thing that is a problem at this point.  He is an otherwise healthy 42 y.o. man who plays raquetball, basketball, works, etc. and doesn't seem to notice any major changes.  He is quite tuned in to every twich, muscle ache, liquid down the wrong pipe "snag", etc. (all of which MAY be normal aches and twitches and swallowing snags)  Maybe just waiting and seeing is the approach we should take.  If it is ALS, there is little we can do, right?  Are there any other tests we should have done?

Again,  thank you for sticking with my questions.

[CCF Neuro[P] MD, RPS]

Dear L.

The diagnosis of ALS early in the disease is sometimes difficult.  But, since he has bulbar signs, there should be paraspinal changes on EMG in the cervical regions.  If these regions are normal, this would be a case against ALS.  However, nothing in medicine is absolute.  Sorry, I do not want to scare you.  There are other things that can cause bulbar or swallowing problems.  Sometimes things need to brew awhile before we can diagnose a problem.  I wish I could tell you that for sure he does not have ALS.  It is difficult because I do not have the chance to examine him.  Also in his favor, if there are no upper motor neuron signs then this is also in favor of him not having ALS.  I wish I could tell you straight away.  Hang in there, love your husband as this is a very difficult time.  It sounds like your a wonderful wife.

Sincerely,

CCF Neuro MD

[Deedee]

I have been following this line of discussion with great interest because one of my symptoms is twitching, also.  In addition, I have a terrible weakness in my muscles, and have even had trouble breathing on occasion.  Rest allows me to function better, but when I get too tired, it takes days before I can walk very far.  So far CK was 76, and Acetylcholine Receptor AB was <0.5, so they have ruled out MG.  However, no distinction was made about what which AB tests were done.  Please, more info on that.  Also am confused about EMG results.  Stated as "normal", but with these variations noted:  some loss in decrease in motor unit, amplitude and duration with some evidence of myopathic recruitment; rare sharp waves in only one location, and early recruiting myopathic units.  The recruitment problem occurred in all nerves tested, and the decreased motor in most.  My Repetitive Stimulation of the Rt ulnar nerve showed no decrement, just baseline wandering.  However, I am concerned because this test was conducted at my wrist, and I have read it is more accurate at the elbow or shoulder.  As my symptoms have not improved overall, I have been considering a second opinion from a neurologist.  Current one has ruled out any neuromuscular problem in me.  Would this be warranted?  Thanks for any help you can offer.  I know you can't Dx, just need to know what direction to go in.

[CCF Neuro[P] MD, RPS]

Dear DeeDee:

Sorry about your physicial problems.  ALS is a frightening disease and most people with twitching or fasciculations are concerned.  The EMG diagnosis includes fibrillations, motor amplitude decreases in three distinct areas of the body, fasciculations, and a normal sensory NCV examination.  The clinical parameters include muscle weakness, no sensory loss, and both upper and lower motor neuron findings.  For EMG diagnosis of MG, one need a loss of amplitude with continued firing of the nerve.  Good news, this was not found on your exam.  There are three antibody types that are associated with MG, although only one need be present.  These are receptor binding, blocking or modulating antibodies.  Yours were really not present so again, this would pretty much tell you that you do not have MG.  

There are several diseases that can give you weakness.  It might be a good idea to visit a neurologist and just have things looked at.  Be sure to bring all your records and films and studies.

Sincerely,

CCF Neuro MD

[Deedee]

So ALS is still a possibility?

[CCF Neuro[P] MD, RPS]

Dear DeeDee:

ALS is not a consideration since your EMG was not indicative nor did you communicate any upper motor neuron involvement.

CCF Neuro MD

[L.]

What is considered upper neuron involvement?

[CCF Neuro[P] MD, RPS]

Dear L:

Anything from the motor strip, supplementary motor area, through the motor tracts of the brain (pyramidal tracts) through the lateral columns of the spinal cord.  Insults to these areas give spasticity, increased reflexes, Babinski sign.

CCF Neuro MD

[L.]

In addition to the slurred speech, my husband's neuro notes a briskness in his reflexes.  Would that be considered "upper neuron" findings.  Also the speech/language pathologist noted  predominantly lower neuron findings and "perhaps some upper motor neuron findings, consistent with flaccid dysarthria and velopharyngeal incompetence characterized by nasal emissions, minimal hoarseness, and a monoloud and minimally monotone voice."

Can you translate what the difference is between upper and lower motor neuron findings in "patientese" for me?  

Also, what kind of "brew" time is considered a reasonable ammount to rule in or out something like ALS or MG?

Thanks for hanging in here with me on this. ;-)

[CCF Neuro[P] MD, RPS]

Dear L:

Upper motor neuron signs are the symptoms created by abnormalities in the motor cortex of the brain and the projecting axons of the motor tracts to the spinal cord.  Lower motor neuron signs are abnormalities created by the spinal cord motor neurons in the spinal cord projecting to the peripheral muscles.  You need to have abnormalities in both to have ALS.  It may be that your husband has both and ALS would be in the things considered for the symptoms.  You need to have your neurologist confirm these things as the internet is not a optimal environment to diagnosis a disease that is really a clinical diagnosis.

Sincerely,

CCF Neuro MD

[L.]

Thanks.  I'm not looking for diagnosis.  Just more information to help us ask the right questions and have some insight.  I appreciate the time and effort to answer our questions.  We go for another consult in a week.  Again,  Thanks.

[CCF Neuro[P] MD, RPS]

You are welcome.

CCF Neuro MD

[dragula167]

i have had the same problem.I am a 40 yr.old female.I had a fusion/decompression on my lower back.After the surgery,i would twitch so bad i couldn't sleep.Sometimes it felt like my whole body was going to jerk right off the bed.It happened even when i was wide awake and just sitting there.Every part of my body twitched.I was also feeking very jumpy all the time.Last night it started up again.I asked my surgeon and they don't have a clue.They look at me like i'm crazy and they've never heard of such a problem.Could there be something wrong?If anyone knows what it could be please write me.

[CCF Neuro[P] MD, RPS]

thanks for the comments.

CCF Neuro MD

[Rhonda]

I don't understand why the doctor said benign twitching is "uncommon."  It seems to me, I hear more people complain about it who do NOT have uncommon ALS.  I twitch when anxious, have for years.  Comes and goes.  I think is IS common from what I have read and heard.

I have a problem with these forums.  They seem to scare people more than help them.

[CCF Neuro[P] MD, RPS]

Dear Rhonda:

Then by all means stop looking at the forum.

CCF Neuro MD

[avery kalnicki]

I have just recently stumbled onto your site and hope that you can answer a few of my questions. When I was in my teens and younger I would experience severe facial twitches at different times. They would show up once and last for a month or longer and then not appear for another year or longer. I found in my teens and a little more into my twenties that I could control them with a vitamin B. There was a span probably for around 8-10 years through my twenties where I didn't have any twitching at  all. About 3 years ago it started again. It has gotten extremely uncomfortable over the last few years and seems to be uncontrollable at times. I saw a neurologist around 2 years ago and he put me on a medication which only semi depressed me and made me very tired all the time. Needless to say I went off the medication soon afterwards. Do you have any suggestions as to what might be causing this and any remedies. I would appreciate any advice.

[CCF Neuro[P] MD, RPS]

Dear Avery Kalnicki:

I am not sure I can help.  Assuming that it is the same twitch you had years ago, I would think that it is not life threatening like ALS.  However, what exactly it is I can not tell you without a good exam, seeing all your labs etc.  I would revisit with your neurologist.  It might be that you have benign fasciculations.

Sincerely,

CCF Neuro MD

[Robert]

About the Fasciculations.

I'm a 2nd year MD student, and I really do suffer from intermittant fasciculations anywhere in the body !!
however, these are not associated with any weakness or wasting, however I'm quite concerned.

They were always present....but after testing positive for Epstein Barr virus (Infectious Mononucleiosis) They seem to have increased substanially.

All my teachers (obviously doctors) say I'm suffering from stress
and fatigue......they are probably right, after all I'm only 20...but as we all know age does not protect anyone from any disease, I've heard of 24 year olds with ALS !


Regards
robert