Get your health question answered instantly from our pool of 18000+ doctors from over 80 specialties
195 Doctors Online

By proceeding, I accept the Terms and Conditions

Dr. Andrew Rynne
MD
Dr. Andrew Rynne

Family Physician

Exp 50 years

HCM Blog Instant Access to Doctors
HCM BlogQuestions Answered
HCM Blog Satisfaction

Hello, I am a 29-year-old Caucasian male, 6'1", 165 pounds.

Answered by
Dr.
Dr. Dariush Saghafi

Neurologist

Practicing since :1988

Answered : 2006 Questions

default
Posted on Tue, 26 Mar 2019 in General Health
Question: Hello, I am a 29-year-old Caucasian male, 6'1", 165 pounds. I have been lifting weights for several years, and have always stayed in reasonably good shape. About 3 months ago (December 2018), I started to notice intermittent fasciculations in my right triceps. It would come and go several times per day, most days of the week. About two weeks ago, I started to notice fasciculations in several other voluntary muscle groups in my body. Now they occur in both triceps, my right deltoid, both legs, my abdomen, and my face. They tend to move around throughout the day. So far, I have not noticed any weakness or muscle atrophy. My fiancé is a physician assistant, and she performed a quick neurological exam on me. She also did not notice any clinical weakness. Do you think that I should see a neurologist? I know that benign fasciculation syndrome exists, but I am worried about the possibility of ALS.
default
Follow up: Dr. Dariush Saghafi 0 minute later
Hello, I am a 29-year-old Caucasian male, 6'1", 165 pounds. I have been lifting weights for several years, and have always stayed in reasonably good shape. About 3 months ago (December 2018), I started to notice intermittent fasciculations in my right triceps. It would come and go several times per day, most days of the week. About two weeks ago, I started to notice fasciculations in several other voluntary muscle groups in my body. Now they occur in both triceps, my right deltoid, both legs, my abdomen, and my face. They tend to move around throughout the day. So far, I have not noticed any weakness or muscle atrophy. My fiancé is a physician assistant, and she performed a quick neurological exam on me. She also did not notice any clinical weakness. Do you think that I should see a neurologist? I know that benign fasciculation syndrome exists, but I am worried about the possibility of ALS.
doctor
Answered by Dr. Dariush Saghafi 1 hour later
Brief Answer:
Your chances at having ALS given the data is almost ZERO

Detailed Answer:
Thank you for your question and your concern.

Given the data you've presented I would not be concerned about any type of chronic degenerative MOTOR NEURON DISEASE in the least. Fasciculations in a 29 year old with no first degree relatives who have motor neuron disease (I know you didn't specifically give me this negative information but I'm assuming it would've been the first thing you would've told me had it been true! HA!) on a background of full muscle strength when tested by a 3rd party, no loss of muscle mass, no unexplained weight loss, yada, yada, yada can equal virtually anything else you'd like in terms of neuromuscular issues MINUS motor neuron disease (e.g. ALS).

Now, if you'd care to see a neurologist for the purpose of trying to find the CAUSE of these fasciculations and correct it such as medications, electrolyte imbalance, too much CREATININE (or MUSCLE MILK, or any number of other nutritional enhancers that come in those Industrial Containers from GNC that cost more than Saffron), or just nerves/tension/stress, etc. then, I wouldn't fault you for wanting to get a visit for that purpose. Of course, the neurologist would be at his XXXXXXX (based upon his examination and the history he gets) to ask that you get lab work done, likely an EMG/NCV, or even Ultrasound (since that it is one of the newer diagnostic modalities some people are claiming can actually distinguish fasciculations of motor neuron disease from BENIGN fasciculations (frankly I'm not at all convinced of that research data and I do not think Ultrasound studies can differentiate those sorts of things with any degree of certainty)....but anyways, that's what the neurologist is going to put your through since your going to go to him with the concern.

If it were me I would let this thing go because to be honest, unless you can really nail down the cause (and in some cases that is possible) then, there aren't very many treatments that can predictably work, and you will be just trying this and that and the other until either you find something that works or you get tired of being a guinea pig, or the thing goes away on its own....which in most cases of BFS that's how it plays out...you really don't even call the condition BFS until you've ruled EVERYTHING ELSE POSSIBLE out....which could take the better part of several weeks to several months by which time most cases of fasciculations will burn themselves out.

But again, if you're into lifting weights and you take any extra STUFF for your lifting strength, physique, etc., etc. then, think about the timing of when these twitches came on vs. when you starting taking these items (or whatever the most recent addition to your regimen may be) and do a little test by eliminating that item from your daily intake of nutritional supplements and see if the twitching stops.

I think you'll be just fine and you should have no worries to just keep on lifting and staying in shape no much how much your muscles twitch and roll. So commonly have I been asked about this issue of twitching and ALS that a couple of years ago (after the ALS ICE BUCKET CHALLENGE STARTED)....I wrote an actual poem on the subject.....if you're interested write back and I'll include it....your fiancee might find it amusing! LOL.

And so, if I've provided useful or helpful information to your question could you do me the favor of CLOSING THE QUERY along with a few POSITIVE words of feedback and maybe even a 5 STAR rating if you feel it is deserved? I'd love to stay in the loop and get some updated information on how things are going in the next few weeks if you can remember to drop me line at: www.bit.ly/drdariushsaghafi

You can always reach me at that address for this or other questions. I wish you the best with your symptoms and hope this information helps you.

This query required 60 minutes of professional time to research, assimilate, and respond in complete form.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
doctor
Answered by Dr. Dariush Saghafi 0 minute later
Brief Answer:
Your chances at having ALS given the data is almost ZERO

Detailed Answer:
Thank you for your question and your concern.

Given the data you've presented I would not be concerned about any type of chronic degenerative MOTOR NEURON DISEASE in the least. Fasciculations in a 29 year old with no first degree relatives who have motor neuron disease (I know you didn't specifically give me this negative information but I'm assuming it would've been the first thing you would've told me had it been true! HA!) on a background of full muscle strength when tested by a 3rd party, no loss of muscle mass, no unexplained weight loss, yada, yada, yada can equal virtually anything else you'd like in terms of neuromuscular issues MINUS motor neuron disease (e.g. ALS).

Now, if you'd care to see a neurologist for the purpose of trying to find the CAUSE of these fasciculations and correct it such as medications, electrolyte imbalance, too much CREATININE (or MUSCLE MILK, or any number of other nutritional enhancers that come in those Industrial Containers from GNC that cost more than Saffron), or just nerves/tension/stress, etc. then, I wouldn't fault you for wanting to get a visit for that purpose. Of course, the neurologist would be at his XXXXXXX (based upon his examination and the history he gets) to ask that you get lab work done, likely an EMG/NCV, or even Ultrasound (since that it is one of the newer diagnostic modalities some people are claiming can actually distinguish fasciculations of motor neuron disease from BENIGN fasciculations (frankly I'm not at all convinced of that research data and I do not think Ultrasound studies can differentiate those sorts of things with any degree of certainty)....but anyways, that's what the neurologist is going to put your through since your going to go to him with the concern.

If it were me I would let this thing go because to be honest, unless you can really nail down the cause (and in some cases that is possible) then, there aren't very many treatments that can predictably work, and you will be just trying this and that and the other until either you find something that works or you get tired of being a guinea pig, or the thing goes away on its own....which in most cases of BFS that's how it plays out...you really don't even call the condition BFS until you've ruled EVERYTHING ELSE POSSIBLE out....which could take the better part of several weeks to several months by which time most cases of fasciculations will burn themselves out.

But again, if you're into lifting weights and you take any extra STUFF for your lifting strength, physique, etc., etc. then, think about the timing of when these twitches came on vs. when you starting taking these items (or whatever the most recent addition to your regimen may be) and do a little test by eliminating that item from your daily intake of nutritional supplements and see if the twitching stops.

I think you'll be just fine and you should have no worries to just keep on lifting and staying in shape no much how much your muscles twitch and roll. So commonly have I been asked about this issue of twitching and ALS that a couple of years ago (after the ALS ICE BUCKET CHALLENGE STARTED)....I wrote an actual poem on the subject.....if you're interested write back and I'll include it....your fiancee might find it amusing! LOL.

And so, if I've provided useful or helpful information to your question could you do me the favor of CLOSING THE QUERY along with a few POSITIVE words of feedback and maybe even a 5 STAR rating if you feel it is deserved? I'd love to stay in the loop and get some updated information on how things are going in the next few weeks if you can remember to drop me line at: www.bit.ly/drdariushsaghafi

You can always reach me at that address for this or other questions. I wish you the best with your symptoms and hope this information helps you.

This query required 60 minutes of professional time to research, assimilate, and respond in complete form.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
default
Follow up: Dr. Dariush Saghafi 8 hours later
Hi Sr. Saghafi,

Thank you for analyzing this critically for me and providing a thoughtful, detailed reply. I will admit I’ve been a nervous wreck over the last two weeks. I am a biologist, so my cursory knowledge of diseases sometimes gets the better of me. Speaking of which, I have noticed some potential new symptoms. Mainly, my muscles ache and feel sore like I’ve worked out, but I have not lifted weights for weeks. I have tested my strength and note no deficits. The muscles just feel fatigued and sore. I also feel more sensitive to temperature changes, particularly getting cold more easily. I have diarrhea every day now, and sometimes I tremble with anxiety.
Even when I was lifting, I never took any strange supplements. I would just come home, have a glass of regular milk, and then eat dinner soon.
You are correct that there is no family history of neurological diseases. My mom’s aunt and uncle both died of adult-onset Pompe’s disease, but the symptoms do not fit my experience. My mom also has Sjögren’s syndrome and fibromyalgia, if that helps.
default
Follow up: Dr. Dariush Saghafi 0 minute later
Hi Sr. Saghafi,

Thank you for analyzing this critically for me and providing a thoughtful, detailed reply. I will admit I’ve been a nervous wreck over the last two weeks. I am a biologist, so my cursory knowledge of diseases sometimes gets the better of me. Speaking of which, I have noticed some potential new symptoms. Mainly, my muscles ache and feel sore like I’ve worked out, but I have not lifted weights for weeks. I have tested my strength and note no deficits. The muscles just feel fatigued and sore. I also feel more sensitive to temperature changes, particularly getting cold more easily. I have diarrhea every day now, and sometimes I tremble with anxiety.
Even when I was lifting, I never took any strange supplements. I would just come home, have a glass of regular milk, and then eat dinner soon.
You are correct that there is no family history of neurological diseases. My mom’s aunt and uncle both died of adult-onset Pompe’s disease, but the symptoms do not fit my experience. My mom also has Sjögren’s syndrome and fibromyalgia, if that helps.
default
Follow up: Dr. Dariush Saghafi 0 minute later
Also, yes, I would love that poem, thank you!
default
Follow up: Dr. Dariush Saghafi 0 minute later
Also, yes, I would love that poem, thank you!
doctor
Answered by Dr. Dariush Saghafi 3 hours later
Brief Answer:
Family history may be worthwhile for you to get a checkup..but not for ALS

Detailed Answer:
Thank you for debunking some of my incorrect myths about how you treat your body...but honestly, with the number of folks on these forums and such little information that is generally provided...answers are best painted in broader strokes in some cases. The use of supplements in those who body build or lift weights for strengthening purposes is so ridiculous these days that much has been written about side effects since so many people are using the materials and of course, IMPROPERLY using them which can cause everything from fasciculations to muscle weakness (paradoxically to what they are advertised to do)...etc. Anyways, nuff said on that count cuz you're a smart biologist who knows all that stuff....I always like to say, "Use the body according to design and it will always be there to serve your every command otherwise, you may just become an average working XXXXXXX stiff!" Slightly brash I'll agree the truth could not be more on point.

Now, in your particular case, we've already reviewed that motor neuron disease is not going to be very likely at all based on a number of factors.....but if you are experiencing muscle aches and soreness and you HAVEN'T been working out recently then, I would first ask....."Why aren't you exercising and keeping up with your previous regimen?" I would counsel you to Get The Heck back on your horse (or whatever transports you to this place of weights and sweat) and start exercising again. There's absolutely nothing that exercise is going to do negatively to you under present circumstances. Who knows whether what you're feeling is not simply on the basis of a rebound reaction of your body trying to tell you to get back and start working out a bit....and maybe it doesn't even have to be the weights....try something different, a little Crossfit, a little Pilates, a little Zumba, a little Kickboxing, whatever, get the heart rate and the circulation going. I'm a bit of an athlete in that department so I speak from experience and coach collegiates as well. You will increase your feeling of well being and decrease some of what your brain is picking up as maladies (i.e. soreness, weakness, achiness, etc. etc.) by orders of magnitude once you get back into some type of escalated PHYSICAL ACTIVITY at least 3x/week....so that's one thing.

Secondly, not to ignore 800 lb. elephants in the room....so if you've got first degree relatives with diagnoses of Sjogren's and 2nd degree relatives have confirmed adult onset POMPE's dz AND my advice for you to get back into your previous physically oriented schedule of fitness AS WELL AS addressing whatever's been making you a "nervous wreck" for the past few weeks...(probably not the fiancee since she agreed to examine you! LOL!! ) THEN, perhaps a visit to your local friendly neuromuscular specialist or even geneticist to have a little meeting and see what some preliminary tests and neurological examination are like wouldn't be a bad idea. If you're not exhibiting any exam based neurological deficiencies I wouldn't go too much further as far as diagnostics are concerned....but as I explained above that would be to the discretion to the examining doctor.

Remember, a doctor to likes to accumulate toys in his office or one that mostly carries an extra scalpel blade in his breast pocket "JUST IN CASE" are potentially dangerous folks since they're at the READY READY (as we say in rugby)! LOL..... But if you've not been looked at yet by a doctor for anything having to do with medical problems that are in your family's history I think that would be a good, smart move to make on your part. Everything comes out clean, you start feeling better, no foul. But if there are some laboratory issues that don't look quite right and the examining physician feels that maybe there are a few findings that don't feel exactly where they should be for an otherwise healthy 27 year old biologist...then, you may be onto something sooner rather than later and perhaps interventions are available....

And so, bottom line from up in XXXXXXX OH where the winds and snow still blow in the month of March....just once in my life I'd like to see March look like it does in so many other parts of the world....HA! My wife's away in Mexico visiting family sending pics back of 80's, 90's, daily sunshine...I told her when she comes back home I'm going to be taking her Parka to the airport just to remind her from whence she came! LOL....

But the bottom line kind sir is that I think there are other things that should be addressed ahead of jumping to conclusions....MOTOR NEURON disease is about the lowest thing on the totem pole list of possibilities I'd worry about....but if you can't get feeling better after a couple of weeks of really trying to kick start things again both physically and mentally then, I would encourage a visit to your friendly Neurologist or Geneticist who can help organize your symptoms in a better way on the basis of both an examination and some appropriate lab and/or diagnostic testing.

And now to the poem I promised you, which doesn't apply to you...but enjoy it all the same....It may have helped many who thought for sure their BFS was the beginning of the end...and it wasn't.... Cheers!


An Ode to the Benign Fasciculation Syndrome (BFS)

If it twitches while in song,
If it twitches but it's strong,
If it twitches, twitches,
Twitches, TWITCHES ALL night long.

If it twitches here or there,
If it twitches everywhere,
Yet the fibers do not rustle,
When you go to make a muscle.

And you've been to Doctor 1,
And you've been to Doctor 2,
And you've been to Doctor 3,
But they all just look at you!

And you've done your labs,
Your sticks, your jabs,
And those painful EMG's
To be told you're fine,
You're good- Bye Bye!
An allergy to Cheese?

So finally, you arrive at home
And those muscles twitch no less.
Think back to what your Granny said,
"Dear Child- it's BFS!"


Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
doctor
Answered by Dr. Dariush Saghafi 0 minute later
Brief Answer:
Family history may be worthwhile for you to get a checkup..but not for ALS

Detailed Answer:
Thank you for debunking some of my incorrect myths about how you treat your body...but honestly, with the number of folks on these forums and such little information that is generally provided...answers are best painted in broader strokes in some cases. The use of supplements in those who body build or lift weights for strengthening purposes is so ridiculous these days that much has been written about side effects since so many people are using the materials and of course, IMPROPERLY using them which can cause everything from fasciculations to muscle weakness (paradoxically to what they are advertised to do)...etc. Anyways, nuff said on that count cuz you're a smart biologist who knows all that stuff....I always like to say, "Use the body according to design and it will always be there to serve your every command otherwise, you may just become an average working XXXXXXX stiff!" Slightly brash I'll agree the truth could not be more on point.

Now, in your particular case, we've already reviewed that motor neuron disease is not going to be very likely at all based on a number of factors.....but if you are experiencing muscle aches and soreness and you HAVEN'T been working out recently then, I would first ask....."Why aren't you exercising and keeping up with your previous regimen?" I would counsel you to Get The Heck back on your horse (or whatever transports you to this place of weights and sweat) and start exercising again. There's absolutely nothing that exercise is going to do negatively to you under present circumstances. Who knows whether what you're feeling is not simply on the basis of a rebound reaction of your body trying to tell you to get back and start working out a bit....and maybe it doesn't even have to be the weights....try something different, a little Crossfit, a little Pilates, a little Zumba, a little Kickboxing, whatever, get the heart rate and the circulation going. I'm a bit of an athlete in that department so I speak from experience and coach collegiates as well. You will increase your feeling of well being and decrease some of what your brain is picking up as maladies (i.e. soreness, weakness, achiness, etc. etc.) by orders of magnitude once you get back into some type of escalated PHYSICAL ACTIVITY at least 3x/week....so that's one thing.

Secondly, not to ignore 800 lb. elephants in the room....so if you've got first degree relatives with diagnoses of Sjogren's and 2nd degree relatives have confirmed adult onset POMPE's dz AND my advice for you to get back into your previous physically oriented schedule of fitness AS WELL AS addressing whatever's been making you a "nervous wreck" for the past few weeks...(probably not the fiancee since she agreed to examine you! LOL!! ) THEN, perhaps a visit to your local friendly neuromuscular specialist or even geneticist to have a little meeting and see what some preliminary tests and neurological examination are like wouldn't be a bad idea. If you're not exhibiting any exam based neurological deficiencies I wouldn't go too much further as far as diagnostics are concerned....but as I explained above that would be to the discretion to the examining doctor.

Remember, a doctor to likes to accumulate toys in his office or one that mostly carries an extra scalpel blade in his breast pocket "JUST IN CASE" are potentially dangerous folks since they're at the READY READY (as we say in rugby)! LOL..... But if you've not been looked at yet by a doctor for anything having to do with medical problems that are in your family's history I think that would be a good, smart move to make on your part. Everything comes out clean, you start feeling better, no foul. But if there are some laboratory issues that don't look quite right and the examining physician feels that maybe there are a few findings that don't feel exactly where they should be for an otherwise healthy 27 year old biologist...then, you may be onto something sooner rather than later and perhaps interventions are available....

And so, bottom line from up in XXXXXXX OH where the winds and snow still blow in the month of March....just once in my life I'd like to see March look like it does in so many other parts of the world....HA! My wife's away in Mexico visiting family sending pics back of 80's, 90's, daily sunshine...I told her when she comes back home I'm going to be taking her Parka to the airport just to remind her from whence she came! LOL....

But the bottom line kind sir is that I think there are other things that should be addressed ahead of jumping to conclusions....MOTOR NEURON disease is about the lowest thing on the totem pole list of possibilities I'd worry about....but if you can't get feeling better after a couple of weeks of really trying to kick start things again both physically and mentally then, I would encourage a visit to your friendly Neurologist or Geneticist who can help organize your symptoms in a better way on the basis of both an examination and some appropriate lab and/or diagnostic testing.

And now to the poem I promised you, which doesn't apply to you...but enjoy it all the same....It may have helped many who thought for sure their BFS was the beginning of the end...and it wasn't.... Cheers!


An Ode to the Benign Fasciculation Syndrome (BFS)

If it twitches while in song,
If it twitches but it's strong,
If it twitches, twitches,
Twitches, TWITCHES ALL night long.

If it twitches here or there,
If it twitches everywhere,
Yet the fibers do not rustle,
When you go to make a muscle.

And you've been to Doctor 1,
And you've been to Doctor 2,
And you've been to Doctor 3,
But they all just look at you!

And you've done your labs,
Your sticks, your jabs,
And those painful EMG's
To be told you're fine,
You're good- Bye Bye!
An allergy to Cheese?

So finally, you arrive at home
And those muscles twitch no less.
Think back to what your Granny said,
"Dear Child- it's BFS!"


Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
default
Follow up: Dr. Dariush Saghafi 2 hours later
Thank you Dr. Saghafi, again I appreciate your encouragement. The one thing that still worries me is reports of people who first noticed fasciculations, and then were diagnosed with ALS. I have read the stories of people like Pete Frates, XXXXXXX Blais, XXXXXXX XXXXXXX who noticed "peculiar twitching" in their arm and shoulder muscles, and went downhill from there. I know that it is an atypical presentation, but it seems it can happen. Unless there were other signs that occurred first, but that they missed. I have been testing my strength at home by doing pushups, and I can still do 3 sets of 50 pushups, the same as always. Perhaps I should try pull ups and squats as well. I have a neurologist appointment tomorrow, so I suppose he will be able to guide me further.
default
Follow up: Dr. Dariush Saghafi 0 minute later
Thank you Dr. Saghafi, again I appreciate your encouragement. The one thing that still worries me is reports of people who first noticed fasciculations, and then were diagnosed with ALS. I have read the stories of people like Pete Frates, XXXXXXX Blais, XXXXXXX XXXXXXX who noticed "peculiar twitching" in their arm and shoulder muscles, and went downhill from there. I know that it is an atypical presentation, but it seems it can happen. Unless there were other signs that occurred first, but that they missed. I have been testing my strength at home by doing pushups, and I can still do 3 sets of 50 pushups, the same as always. Perhaps I should try pull ups and squats as well. I have a neurologist appointment tomorrow, so I suppose he will be able to guide me further.
doctor
Answered by Dr. Dariush Saghafi 13 hours later
Brief Answer:
I support your decision to be checked by an expert

Detailed Answer:
Thank you for your clarifications and let me say that I wholeheartedly support your decision to have a neurologist see you for at least a good physical examination. I never stand in the way of patients who feel very compelled to get an examination by an expert with symptoms as you describe.

We know that by the numbers and other epidemiological data that the likelihood of you having ALS at some point in time in the U.S. is about 0.0046% or 4.6/1,000,000 and so clearly it is not a 0% chance....I agree with you that there are more than 1 person who have developed highly atypical symptoms of ALS at extremely young ages but as a doctor my obligation to tell patients first and foremost is whether I believe they are one of the ATYPICAL ones such as you've described or more likely not one who suffers from this disease.

Thusfar, I've yet to see any impressive data that point the finger at your having ALS. As I've mentioned before, fasciculations are extremely common in ALS based NOT on the extreme exceptions of the world/universe but rather of the more likely findings.

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
doctor
Answered by Dr. Dariush Saghafi 0 minute later
Brief Answer:
I support your decision to be checked by an expert

Detailed Answer:
Thank you for your clarifications and let me say that I wholeheartedly support your decision to have a neurologist see you for at least a good physical examination. I never stand in the way of patients who feel very compelled to get an examination by an expert with symptoms as you describe.

We know that by the numbers and other epidemiological data that the likelihood of you having ALS at some point in time in the U.S. is about 0.0046% or 4.6/1,000,000 and so clearly it is not a 0% chance....I agree with you that there are more than 1 person who have developed highly atypical symptoms of ALS at extremely young ages but as a doctor my obligation to tell patients first and foremost is whether I believe they are one of the ATYPICAL ones such as you've described or more likely not one who suffers from this disease.

Thusfar, I've yet to see any impressive data that point the finger at your having ALS. As I've mentioned before, fasciculations are extremely common in ALS based NOT on the extreme exceptions of the world/universe but rather of the more likely findings.

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
default
Follow up: Dr. Dariush Saghafi 14 hours later
Hi Dr. Saghafi,

Thank you again for your guidance. I saw a neurologist today, and he did a full physical exam. He did not observe any weakness, atrophy, or abnormal reflexes. He reiterated what you said, that fasciculations generally come after weakness in ALS. He will do an EMG on March 18 to be sure. Still, he thinks this is benign fasciculation syndrome. In your own experience, both from talking to patients online and through your clinical practice, how common is BFS in young men?

All the best, XXXXXXX
default
Follow up: Dr. Dariush Saghafi 0 minute later
Hi Dr. Saghafi,

Thank you again for your guidance. I saw a neurologist today, and he did a full physical exam. He did not observe any weakness, atrophy, or abnormal reflexes. He reiterated what you said, that fasciculations generally come after weakness in ALS. He will do an EMG on March 18 to be sure. Still, he thinks this is benign fasciculation syndrome. In your own experience, both from talking to patients online and through your clinical practice, how common is BFS in young men?

All the best, XXXXXXX
doctor
Answered by Dr. Dariush Saghafi 3 hours later
Brief Answer:
CONGRATULATIONS! Great News...Did you check to see if Granny's got it too?

Detailed Answer:
I'm happy to hear that you had a successful visit with the neurologist who was able to put your mind at ease with the diagnosis of probable BFS or at least something other than motor neuron disease (MND) or ALS. I very much suspected that he would come up with that evaluation but there's nothing like getting the full Magilla done for you by an expert who knows what to look for, right?

To your question on BFS....let's put it this way.....PRIOR to my getting out of residency training in 1999 I MAY have seen a few cases of BFS during my entire time in training on the Neurology wards. Probably that's because they really came to the hospital...makes sense.....I'm sure we must've discussed the entity whenever we had neuromuscular case discussions or even patients on the floor with some sort of MND but quite frankly, if we did mention the entity in any important way....it escapes my memory and since we weren't seeing patients with the problem....it likely didn't mean very much to me.

Now, however, and especially after the ALS bucket challenge got started (and of course, you know it was XXXXXXX Frate who was responsible for that activity) I can't tell you how many YOUNG men, women, boys, girls, have come to me with this question....well, you tell me.....Ever run into a doctor who has seen so much BFS in his career that he went to the trouble of writing some prose??? LOL!!

So, if you're asking what's my EXPERIENCE in seeing this? TONS! I didn't have the slightest concept prior to the ALS bucket challenge that so many human beings in the world could possibly have episodes of BFS at the same time. I think the condition is so common at this point that I believe a work group should be started just to analyze and study the possibility that we could just consider a NORMAL PART OF most young adults' lives at SOME POINT that either resolves on its own without much fanfare or anything...or perhaps continues....but....to the point where just live with it and don't even think about anymore.....sort of like a motor tic that a person gets used to that is so commonplace for them that nobody in the family even pays any attention to them....right?

Soooo common that I've seen this. Of course, where Mr. Frate (in my opinion dropped the ball) is not thinking ahead to the consequences of having brought something to light which is altogether benign and of no clinical significance and tieing it together with something as terminal and terrible as ALS.....I understand why he did it.....but I don't know if it really created more good or bad in the world simply because it has now triggered an avalanche and plethora of discord, fear, and anxiety, that really never existed since most people had never heard of ALS, fasciculations, twitching muscles.....if they had such a condition in the 1950's or any decade beyond that...even up to the 2000's they just lived with it....because no doctor really knew about it or how to effectively treat it...but they knew that it was BENIGN.....You know what I mean....

Ah well,,,,,those are some of my unsolicited thoughts on how this has gone and I'm glad to hear that you are definitely out of the woods. I know the EMG is going to be done but you should know that electrical studies are universally negative for suggesting a diagnosis of MND when neurological examinations and history do not support the diagnosis. In other words, such tests are not predictive of anything.

Again, it's one of those selling points of medicine...we believe that tests are so accurate that we fail to note their limitations or even when they are best utilized...but then, doctors should really start better campaigns I think to educate the public as to when it's appropriate and when not to do some of these tests.

No worries though....you'll be able to tell everyone you know exactly what it's like to get stuck, shocked, stuck, and shocked some more! HAHA......Just look at the poem!

Speaking of which....why not do a little investigating into your family tree.....DOES GRANNY HAVE SOMETHING THAT SHAKES AND TWITCHES BY CHANCE??? Is there someone keeping a secret just because they've lived with it all their lives, realized it wasn't going to result in anything, maybe even gone to their doctors 50 years ago who just said, "I dunno..." and then, left it like that? I'll betcha you can find someone with a little bit of this in your lineage....do some detective work and see what you come up with! HA!

Cheers Sir!

Please don't forget to shut the lights off and close the doors and windows by CLOSING THE QUERY if you think we've got it covered. Would you do me 2 favors before you leave?

1. Please see if a few comments on this exchange can result in a bit of positive feedback on how we've done things...if possible a 5 STAR would be much obliged....
2. Would you drop me a line with the results of your EMG/NCV study? You can reach me in the future having to do with this question or any other.....and that goes for your fiancee by dialing up: www.bit.ly/drdariushsaghafi

Once again, many thanks for your kind attention and interest in chatting with me on this channel! Take care....
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
doctor
Answered by Dr. Dariush Saghafi 0 minute later
Brief Answer:
CONGRATULATIONS! Great News...Did you check to see if Granny's got it too?

Detailed Answer:
I'm happy to hear that you had a successful visit with the neurologist who was able to put your mind at ease with the diagnosis of probable BFS or at least something other than motor neuron disease (MND) or ALS. I very much suspected that he would come up with that evaluation but there's nothing like getting the full Magilla done for you by an expert who knows what to look for, right?

To your question on BFS....let's put it this way.....PRIOR to my getting out of residency training in 1999 I MAY have seen a few cases of BFS during my entire time in training on the Neurology wards. Probably that's because they really came to the hospital...makes sense.....I'm sure we must've discussed the entity whenever we had neuromuscular case discussions or even patients on the floor with some sort of MND but quite frankly, if we did mention the entity in any important way....it escapes my memory and since we weren't seeing patients with the problem....it likely didn't mean very much to me.

Now, however, and especially after the ALS bucket challenge got started (and of course, you know it was XXXXXXX Frate who was responsible for that activity) I can't tell you how many YOUNG men, women, boys, girls, have come to me with this question....well, you tell me.....Ever run into a doctor who has seen so much BFS in his career that he went to the trouble of writing some prose??? LOL!!

So, if you're asking what's my EXPERIENCE in seeing this? TONS! I didn't have the slightest concept prior to the ALS bucket challenge that so many human beings in the world could possibly have episodes of BFS at the same time. I think the condition is so common at this point that I believe a work group should be started just to analyze and study the possibility that we could just consider a NORMAL PART OF most young adults' lives at SOME POINT that either resolves on its own without much fanfare or anything...or perhaps continues....but....to the point where just live with it and don't even think about anymore.....sort of like a motor tic that a person gets used to that is so commonplace for them that nobody in the family even pays any attention to them....right?

Soooo common that I've seen this. Of course, where Mr. Frate (in my opinion dropped the ball) is not thinking ahead to the consequences of having brought something to light which is altogether benign and of no clinical significance and tieing it together with something as terminal and terrible as ALS.....I understand why he did it.....but I don't know if it really created more good or bad in the world simply because it has now triggered an avalanche and plethora of discord, fear, and anxiety, that really never existed since most people had never heard of ALS, fasciculations, twitching muscles.....if they had such a condition in the 1950's or any decade beyond that...even up to the 2000's they just lived with it....because no doctor really knew about it or how to effectively treat it...but they knew that it was BENIGN.....You know what I mean....

Ah well,,,,,those are some of my unsolicited thoughts on how this has gone and I'm glad to hear that you are definitely out of the woods. I know the EMG is going to be done but you should know that electrical studies are universally negative for suggesting a diagnosis of MND when neurological examinations and history do not support the diagnosis. In other words, such tests are not predictive of anything.

Again, it's one of those selling points of medicine...we believe that tests are so accurate that we fail to note their limitations or even when they are best utilized...but then, doctors should really start better campaigns I think to educate the public as to when it's appropriate and when not to do some of these tests.

No worries though....you'll be able to tell everyone you know exactly what it's like to get stuck, shocked, stuck, and shocked some more! HAHA......Just look at the poem!

Speaking of which....why not do a little investigating into your family tree.....DOES GRANNY HAVE SOMETHING THAT SHAKES AND TWITCHES BY CHANCE??? Is there someone keeping a secret just because they've lived with it all their lives, realized it wasn't going to result in anything, maybe even gone to their doctors 50 years ago who just said, "I dunno..." and then, left it like that? I'll betcha you can find someone with a little bit of this in your lineage....do some detective work and see what you come up with! HA!

Cheers Sir!

Please don't forget to shut the lights off and close the doors and windows by CLOSING THE QUERY if you think we've got it covered. Would you do me 2 favors before you leave?

1. Please see if a few comments on this exchange can result in a bit of positive feedback on how we've done things...if possible a 5 STAR would be much obliged....
2. Would you drop me a line with the results of your EMG/NCV study? You can reach me in the future having to do with this question or any other.....and that goes for your fiancee by dialing up: www.bit.ly/drdariushsaghafi

Once again, many thanks for your kind attention and interest in chatting with me on this channel! Take care....
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
default
Follow up: Dr. Dariush Saghafi 13 hours later
Hi Dr. Saghafi,

Thank you, my neurological examination yesterday did help to put my mind at ease. My neurologist did not necessarily recommend the EMG. He said that he sees about one patient like me every 6 months who presents with likely benign fasciculations, but likes to have an EMG anyway to test as thoroughly as possible. He warned me that it will be uncomfortable, so I can tell that he was offering it instead of recommending it. Still, as a scientist, I like to have all the information I can. I have also read case reports and reviews by ALS experts such as Prof. XXXXXXX XXXXXXX who have noted that fasciculations without clinical weakness or other abnormalities usually point in the direction of BFS, and rarely point to any kind of motor neuron disease. Still, it is difficult to avoid being anxious in the face of something so potentially horrible. I do have generalized anxiety and OCD, so I should really look into managing that. Exercise and fresh air help, so before I return to the gym, I will get outside and start hiking again. I love the mountains, and North XXXXXXX has some nice ones.

You are right about the ice bucket challenge. If you give the public more information, oftentimes you give them something additional to worry about. I performed the Ice Bucket Challenge in 2014, but still did not really start worrying about ALS until I began having these fasciculations. Then again, as a biologist, I would have worried anyway. I give more thought to my body's processes than the average person. I used to want to be a physician actually, before I changed course and got my Ph.D. in Immunology. So technically I am a doctor, but "not that kind of doctor," haha!

As for family history, sadly I have no grandparents to ask. Both of my grandfathers died long before I was born. My maternal grandfather died at 55 of a stroke, paternal grandfather at 40 from...a heart attack I think? My dad really does not talk about such things. Both of my grandmothers lived a pretty long time. My paternal grandmother died at 85, but she was physically frail for a long time (no muscle wasting, though). My maternal grandmother was physically robust until her mid-80s, when she developed severe dementia. She still lived to be 90, when she passed due to aspiration pneumonia (secondary to her dementia). I never remember her shaking, though. So I appear to have something all my own, lol.

My mother does have autoimmune issues. She was diagnosed with Sjögren's syndrome, and has some features of other autoimmune conditions. She was also diagnosed with fibromyalgia, but I know that is in the same category as BFS. My mother and I also both have leukopenia, yet we are not any more vulnerable to infections than the average person. We have both had bone marrow biopsies which do not show any signs of malignant transformation. So our bone marrow is a bit lazy, but the resulting white blood cells work extra hard, it seems. I do wonder sometimes if I could have fibromyalgia like my mom, because my muscles all ache and feel very fatigued during times of stress. But, that would be something to follow up with my hematologist or rheumatologist, neither of whom was able to find anything conclusive 10 years ago except my leukopenia and some mildly elevated autoimmune markers.

I am sorry that I made this a long story. I suppose I should just get on with living my life. I should hear later today whether I will become the new science writer for the Breast Oncology Department at Dana-Farber Cancer Institute. That would be my dream, so I hope I get the job. Perhaps everything will fall into place from there. My fiancé and I will get married in October, and then work on starting a family of our own.

But yes, I will definitely give you a 5-star rating, as you have been most patient and helpful. I will also let you know how things go after I get the EMG, and if anything else unusual arises. Until then, I wish you the absolute best.

All the best, XXXXXXX
default
Follow up: Dr. Dariush Saghafi 0 minute later
Hi Dr. Saghafi,

Thank you, my neurological examination yesterday did help to put my mind at ease. My neurologist did not necessarily recommend the EMG. He said that he sees about one patient like me every 6 months who presents with likely benign fasciculations, but likes to have an EMG anyway to test as thoroughly as possible. He warned me that it will be uncomfortable, so I can tell that he was offering it instead of recommending it. Still, as a scientist, I like to have all the information I can. I have also read case reports and reviews by ALS experts such as Prof. XXXXXXX XXXXXXX who have noted that fasciculations without clinical weakness or other abnormalities usually point in the direction of BFS, and rarely point to any kind of motor neuron disease. Still, it is difficult to avoid being anxious in the face of something so potentially horrible. I do have generalized anxiety and OCD, so I should really look into managing that. Exercise and fresh air help, so before I return to the gym, I will get outside and start hiking again. I love the mountains, and North XXXXXXX has some nice ones.

You are right about the ice bucket challenge. If you give the public more information, oftentimes you give them something additional to worry about. I performed the Ice Bucket Challenge in 2014, but still did not really start worrying about ALS until I began having these fasciculations. Then again, as a biologist, I would have worried anyway. I give more thought to my body's processes than the average person. I used to want to be a physician actually, before I changed course and got my Ph.D. in Immunology. So technically I am a doctor, but "not that kind of doctor," haha!

As for family history, sadly I have no grandparents to ask. Both of my grandfathers died long before I was born. My maternal grandfather died at 55 of a stroke, paternal grandfather at 40 from...a heart attack I think? My dad really does not talk about such things. Both of my grandmothers lived a pretty long time. My paternal grandmother died at 85, but she was physically frail for a long time (no muscle wasting, though). My maternal grandmother was physically robust until her mid-80s, when she developed severe dementia. She still lived to be 90, when she passed due to aspiration pneumonia (secondary to her dementia). I never remember her shaking, though. So I appear to have something all my own, lol.

My mother does have autoimmune issues. She was diagnosed with Sjögren's syndrome, and has some features of other autoimmune conditions. She was also diagnosed with fibromyalgia, but I know that is in the same category as BFS. My mother and I also both have leukopenia, yet we are not any more vulnerable to infections than the average person. We have both had bone marrow biopsies which do not show any signs of malignant transformation. So our bone marrow is a bit lazy, but the resulting white blood cells work extra hard, it seems. I do wonder sometimes if I could have fibromyalgia like my mom, because my muscles all ache and feel very fatigued during times of stress. But, that would be something to follow up with my hematologist or rheumatologist, neither of whom was able to find anything conclusive 10 years ago except my leukopenia and some mildly elevated autoimmune markers.

I am sorry that I made this a long story. I suppose I should just get on with living my life. I should hear later today whether I will become the new science writer for the Breast Oncology Department at Dana-Farber Cancer Institute. That would be my dream, so I hope I get the job. Perhaps everything will fall into place from there. My fiancé and I will get married in October, and then work on starting a family of our own.

But yes, I will definitely give you a 5-star rating, as you have been most patient and helpful. I will also let you know how things go after I get the EMG, and if anything else unusual arises. Until then, I wish you the absolute best.

All the best, XXXXXXX
doctor
Answered by Dr. Dariush Saghafi 25 hours later
Brief Answer:
A pleasure to meet you DOCTOR

Detailed Answer:
I'm so glad you decided to go the "long way" and tell me a bit about yourself and your background. I had sensed that there was more behind your insightfulness and astute perception of my explanations than just vivacious curiosity of one just likes to read about infirmities. And I'm sure you also know that it is not all that infrequent that those who know and are educated the most are often the ones to enter into the realms of the most difficult and obssessive scenes that are very difficult (for some impossible) to get out of in terms of doom and gloom..... In fact, hands down, medical students are the most difficult for me to counsel or talk to about these sorts of issues.

It really is a tricky affair and one that needs someone with a solid working knowledge of how the psyche works in people since logic and reasoning (which is what most people try and use) simply fails to help those with Health Anxiety entirely overcome their troubles.

At any rate, I wholeheartedly agree that if you were to locate someone in your locale who was experienced in treating folks with HEALTH ANXIETY (formerly known as hypochondriasis) then, you'll find that one of the most utilized techniques these days (they change every 10 years or thereof with new working committees! HA!) is CBT (cognitive behavioral therapy) and I suspect in your case you would do very well in that realm with someone who is expert at applying to your individual needs.

And I think in fact, you are "getting on with your life" very well I might add. I should be looking for you in the journal articles some time in the near future. You may be able to help me solve my enigmatic patients who have Lupus Cerebritis, Neuromyelitis Optica, and of course, everyone's favorite, Chronic Fatigue Syndrome! LOL....I think I've finally come to the realization that it's less my lack of understanding of how to perfectly diagnose or distinguish these diseases....it's the diagnostic criteria that are forever being tweaked as well as just the definition of these disease itself which they can't seem to hold very still before someone has another theory that shoots everything else to hell....and then, of course, let's not even talk about all the biologics....(whcih by the way, I don't trust, I'm not at all fond of..if for no other reason than the fact that the drug companies make them sound so pleasing to the palate and benign!)....so I tend to promote more time tested things such as IVIg, SOLUMEDROL with drug holidays, and MEGADOSES of Vitamin C and normal ranges of Vitamin D that run about 3x higher than the normal lab parameters do in most areas. Those are some of my mainstays of recommended treatments for flares and maintenance.

Everything else? I'm jus waiting for the FDA to start to start pulling some of these things with names that have more consonants than the Russian Language! LOL...

Anyways kind sir....I think you're doing very well and will do very well. I'd love to hear the results of the EMG/NCV study......which should obviously be negative.

Please write to me in the future at: www.bit.ly/drdariushsaghafi and I'll be keeping my eye peeled for some of those up and coming articles coming out of the XXXXXXX Farber CI....hey, just put me on their mailing list if you'd like....I've got a paraneoplastic patient here and there that ends up testing positive for Breast CA, so I could always use a bit of a refresher in what's new and exciting in that field! LOL....

Cheers!
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
doctor
Answered by Dr. Dariush Saghafi 0 minute later
Brief Answer:
A pleasure to meet you DOCTOR

Detailed Answer:
I'm so glad you decided to go the "long way" and tell me a bit about yourself and your background. I had sensed that there was more behind your insightfulness and astute perception of my explanations than just vivacious curiosity of one just likes to read about infirmities. And I'm sure you also know that it is not all that infrequent that those who know and are educated the most are often the ones to enter into the realms of the most difficult and obssessive scenes that are very difficult (for some impossible) to get out of in terms of doom and gloom..... In fact, hands down, medical students are the most difficult for me to counsel or talk to about these sorts of issues.

It really is a tricky affair and one that needs someone with a solid working knowledge of how the psyche works in people since logic and reasoning (which is what most people try and use) simply fails to help those with Health Anxiety entirely overcome their troubles.

At any rate, I wholeheartedly agree that if you were to locate someone in your locale who was experienced in treating folks with HEALTH ANXIETY (formerly known as hypochondriasis) then, you'll find that one of the most utilized techniques these days (they change every 10 years or thereof with new working committees! HA!) is CBT (cognitive behavioral therapy) and I suspect in your case you would do very well in that realm with someone who is expert at applying to your individual needs.

And I think in fact, you are "getting on with your life" very well I might add. I should be looking for you in the journal articles some time in the near future. You may be able to help me solve my enigmatic patients who have Lupus Cerebritis, Neuromyelitis Optica, and of course, everyone's favorite, Chronic Fatigue Syndrome! LOL....I think I've finally come to the realization that it's less my lack of understanding of how to perfectly diagnose or distinguish these diseases....it's the diagnostic criteria that are forever being tweaked as well as just the definition of these disease itself which they can't seem to hold very still before someone has another theory that shoots everything else to hell....and then, of course, let's not even talk about all the biologics....(whcih by the way, I don't trust, I'm not at all fond of..if for no other reason than the fact that the drug companies make them sound so pleasing to the palate and benign!)....so I tend to promote more time tested things such as IVIg, SOLUMEDROL with drug holidays, and MEGADOSES of Vitamin C and normal ranges of Vitamin D that run about 3x higher than the normal lab parameters do in most areas. Those are some of my mainstays of recommended treatments for flares and maintenance.

Everything else? I'm jus waiting for the FDA to start to start pulling some of these things with names that have more consonants than the Russian Language! LOL...

Anyways kind sir....I think you're doing very well and will do very well. I'd love to hear the results of the EMG/NCV study......which should obviously be negative.

Please write to me in the future at: www.bit.ly/drdariushsaghafi and I'll be keeping my eye peeled for some of those up and coming articles coming out of the XXXXXXX Farber CI....hey, just put me on their mailing list if you'd like....I've got a paraneoplastic patient here and there that ends up testing positive for Breast CA, so I could always use a bit of a refresher in what's new and exciting in that field! LOL....

Cheers!
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
premium_optimized

The User accepted the expert's answer

Share on