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LatinoLoco

Member
Joined
Mar 23, 2010
Messages
22
Reason
Learn about ALS
Country
CA
State
On
City
Toronto
Hello all,

I have been lurking on this forum for about 6 months and I am finally getting the courage to post what I have been experiencing and my source of grief. I do apologize if this is a long post; I did try my best to condense it, but really couldn't as I don't want to leave any important details out. Thank you in advance for taking your time to read and any advice/info would be greatly appreciated. I am a 29 year old male from Toronto, Canada.

Last year at around this time I started an extensive workout program. Following this workout program I experienced twitching/fasciculations throughout my body (legs, arms, hands, feet, neck etc..), but didn't think much of it as I just related them to the demanding workout routine.

Twitching became more obvious and I developed a tremor on my left arm/hand, especially noticeable upon exertion. Left arm seemed to fatigue rather quickly which made this tremor worse. Naturally, I looked up these symptoms online and bumped into ALS and this forum, so I panicked. Stopped the serious working out around last August, but continued to test my strength (especially the left arm). I would normally do dumbbell curls with heavy weights, but important to note that since I was just randomly testing my strength(due to my fears) I didn't warm up my muscles at all.

Around October, I wake up in the morning and notice that a piece of my short head bicep (inside near the armpit) running up to the anterior/front shoulder seems to have been torn off. Shoulder no longer had that full roundness. Indentation (deep dent, not there before) on the bicep is very noticeable and I have what looks like fresh stretch marks at the site of concern. I realize stretch marks are caused by gaining muscle, but can also be caused by rapid loss of muscle which is what looks like happened in my case. :confused: Of course I panicked, thinking muscle twitching+visible muscle atrophy=ALS. I make an appt with my Dr. and still continue to test my strength. Strength doesn't seem too affected, but the arm tires unusually quick and I also get a mild pain at the bicep indentation and the shoulder area. To this day I get a mild pain around the shoulder/affected area and even feel it on what seems like the clavicle and surrounding bones. I also notice that my deltoid is no longer round and has lost some mass. Not completely gone but definitely flattened. Deltoid has progressed and I can safely say it is smaller than what it was about a month ago. Also, notice scapular winging when flexing my bicep/arm. Depending on my position, I can actually feel my scapula bone sticking out. This is very noticeable.

My Dr. examines me, does bloodwork, books me for an EMG and sends me to a Neurologist as he knows what my biggest fear is. I've had 2 EMG's on the left arm and 2 different neuro check ups. The EMG's were normal and the neuro appointment was also normal.

GP sends me for an ultrasound of the left shoulder. Ultrasound says:
"an irregular 8x4 partial tear, undersurface of the supraspinatus tendon insertion. Mild hyperemia on Doppler images shown. A small peritendinous effusion. The remaining rotator cuff, long head biceps and tendon and AC joint images are unremarkable. No impingement with movement." Not sure what hyperemia and small peritendinous effusion mean. Any info on that?

So here I am....with an atrophied left arm and now some scapular winging. Twitches are felt more than even and I am still concerned about an MND like ALS even though the Dr. says that both EMG's are reassuring that it isn't. I just want to know if it is possible for a shoulder injury, like the one presented in the ultrasound, to be the cause of atrophy of the shoulder, bicep, deltoid and scapular winging? This has been giving me alot of grief and anxiety and I am sick of being worried, but I can't help it since I see the atrophy everytime I look in the mirror and take a shower. Any ideas on what is going on? I intend to request an MRI just to see if there is anything else going on in the upper arm. Again, I do apologize for this really long message, but any suggestions are welcomed at this point. Thank you.
 
Suggestion #1 -- Take the questions you have asked here to the doctors who are currently treating you. Nothing you describe here has the slightest thing to do with ALS. All those fancy medical words you don't know and can't be troubled to look up seem to refer to collections of fluid surrounding what appears to be a tear in one of the muscles or tendons in your shoulder. Doctors have their own little code words, but what they appear to be describing is some sort of swelling or bruising in the tissues surrounding the injury.

Suggestion #2 -- Take any followup questions that you might have concerning this situation to either a sports medicine or a bodybuilding forum. You do not have ALS, as evidenced by your clean EMGs and neurological exams. You will be much more likely to find people like yourself in one of those two types of communities than you will here. Very few of us here are or were bodybuilders, and you may find the lack of sympathy and support that you'll probably get here a bit discouraging.

Good luck to you in your recuperation from your injury and have a nice life.
 
Thank you for your reply, however, I am not looking for any sort of sympathy...Simply looking to see if anyone else in this forum has had similar symptoms and experienced something similar. I know you say nothing I "describe here has the slightest thing to do with ALS", but I beg to differ since muscle atrophy, very visible I might add, accompanied with twitching (local and widespread) is one of my main concerns. Thank you also for clearing up the medical terms.

Also, I think you have misunderstood as nowhere in my original post did I say I was or am a bodybuilder. I started a workout routine primarily to get fit/lean and healthy. Alot of it was cardio and dumbbells weighing no more than 20 pounds. I am sorry if my questions or concerns seem illegitimate and I didn't mean to offend at all.

Another question (not necessarily to trfogey since I seemed to have unintentionally irked u)

I did have two emg's, both were done on the one limb (my left arm)....Should the EMG have been more thorough and examined more limbs or is it fine that they focused on the affected arm? I guess what I'm trying to say is, if the atrophy on my left upper arm is caused by ALS, those EMG's should have picked it up?
 
Ask your doctor that question, not us. Clean EMG, NO ALS. Do a search and read all about it, but we are not doctors.These questions "irk" a lot of people.
 
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latinoloco listen here i always worked out to stay fit i had noticed a twitch in my left shoulder area i thought it was from working out you know.that was 8 years ago i dont want to scare you but after time of working out i noticed my left bicep was not as big as my right then the twithing went down to my forearm .a couple of weeks later it moved to the other arm i had an emg done and had activity going on throughtout my whole body aug 09 i was diagnosed with bulbar als .i would deffinately pay attention to it . take care loco jeffp
 
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I'm neither irked nor offended by you, LatinoLoco. I merely answered your questions directly. Since you are not here looking for sympathy, then I presume you prefer plain and direct answers. I presume you'll let me know if you prefer a different approach.

My first suggestion -- taking your questions back to the doctors who have been treating you -- was given to point you to the most direct means of getting all your questions answered. For example, twitching and atrophy can be caused by ALS, but this does not apply to you because you have had two normal EMGs and two clinical neurological examinations that were normal.

1) Had the weakness and atrophy you say you have in your shoulder been caused by lower motor neuron pathology, the damage to the lower motor neurons would have been detected by the EMGs and those tests results would have been abnormal, not normal.

2) Had the weakness and atrophy in your shoulder been caused by upper motor neuron pathology, the clinical neurological exams would have been abnormal and you would be reporting a completely different set of symptoms than you report now.

3) Since you have neither upper nor lower motor neuron problems at this time in your arm and shoulder (per the two normal EMGs and the two normal clinical neurological exams), you do not have ALS in in your arm and shoulder. Since you have neither complained of nor been tested for similar symptoms in any other part of your body, it is virtually certain that you don't have ALS at all.

From the information in 1-3 above you can see that your concerns about ALS have been dealt with by your doctors. That includes your concerns about twitching as well. If you don't have ALS now, then your twitching is not caused by ALS and never was. The twitching seen in ALS is caused by the same lower motor neuron problems that the neuros were looking for with the EMGs. No LMN problems -- the twitching is not caused by ALS.

Hope this helps.
 
Thank you all for the replies.

I do realize that although I have twitching and atrophy, alot of this points away from ALS and my age should be a reassuring factor.

I guess what really got me going is that I had a conversation with a sports Doctor not too long ago that told me fasciculations are not an indicating factor of muscle injuries. When my left shoulder/deltoid area started to twitch after I noticed the atrophy I went into a frenzy and her words didn't make me better. I guess I was hoping she would tell me that a muscle injury could definitely cause twitching and atrophy and localised atrophy.

Trfogey, thank you for the direct response.

Sorry Sadiemae since you said these questions do tend to irk alot of people, but I guess you tend to find that in a forum like "Do I have ALS?" Unfortunately, doing a little search, like you advised leads many of us to this site (and what a great educational site it is).

Take care and many blessings.

O
 
Hey Jeff,

I was just curios about something in your post. You stated that you noticed your limbs starting to atrophy and at a rather alarming pace from what you have described. You had an EMG done, which showed alot of activity in those limbs, but you were diagnosed with bulbar ALS? Were you originally diagnosed with limb onset due to the atrophy on your arm? I was just wondering because it is my understanding that limb atrophy is sign of LMN while bulbar is UMN? Again, I'm not sure if this is correct, but was just curios on your post. Thanks.
 
Nothing in your story points to ALS . . . not one thing. You say that it does because you have weakness and atrophy and twitching. That means absolutely nothing, given your entire story and your CLEAN EMG'S. A clean EMG means . . . NO ALS. It's as simple as that.

Stop taking a few symptoms and then try to fit them into a neat little "ALS box." That's not the way physicians (yes, physicians and not lay people) diagnose disease. If I described an animal to you and said that it has four legs, a tail, and a long snout . . . and I'm looking at that animal and it is clearly a horse, don't come back to me and tell me it's not a horse, but rather it's a dog, because dogs also have four legs, a tail and a long snout.

Good luck with the treatment of your muscle tear. By the way, I've had them, and they are EXACTLY as you describe.
 
Wright,

Thanks for the reply. You have had muscle and/or tendon tears....So it is possible than for a muscle suddenly and continously atrophy and twitch due to a tear? I'm sorry if I am aggravating with my questions.....I just look at my upper left arm and I see practically no roundness anymore (particularly the deltoid, which is getting worse).
 
You're welcome . . . and yes . . . that is definitely the case.

Again, your EMG's were normal, which means that the muscle atrophy (and it's probably not muscle atrophy but rather, just a change in muscle structure and possibly damage to soft tissue surrounding the affected area) has absolutely nothing to do with denervation.

The other operative word here is "suddenly", which is how you state your symptoms manifested. ALS is an insidious disease that sneaks-up on you. You were hit over the head with a big hammer in a very sudden manner, which is not at all how ALS works.

Rest your body and get the treatment you need for the condition that you have. You will be back in the gym before you know it. The next time around, be smart and ease into your workouts. Take care and good luck.
 
Thanks again for your advice and input Wright. Everyone that replied to my thread, you have been a great help and I do appreciate it.

O.
 
Ooh I forgot...something stood out in your post Wright...Really made sense what you said about this probably not being atrophy at all, but rather a change in muscle structure from tissue damage and injury because other than the arm getting tired quickly, I can still lift pretty much the same amount of weight on my dumbbells (just that I can't do as many sets due to arm fatigue).....I imagine that if this was ALS atrophy I would have more obvious WEAKNESS....I mean, if I am at the point of visible atrophy from ALS, lifting dumbbells would probably be a far fetched idea huh? It's very interesting how there can be different types of weakness from let's say an injury as opposed to a disease like ALS.
 
LatinoLoco,

Bulbar onset, like all the other types of ALS onset, can start in either upper or lower motor neurons controlling muscles in the mouth and throat. Second, it is estimated by some ALS specialists that by the time a patient notices symptoms and goes to the doctor, as many as 50 to 60 percent of the motor neurons in the body may already be compromised -- one reason why ALS may progress so much quicker in some people than in others.

I don't know Jeff's particular case, but I imagine that his bulbar region must have been where his ALS symptoms were most advanced at the time of diagnosis. In my own case, the noticeable symptoms began in my left arm and hand, but spread into other parts of my body years before my right arm was visibly affected, yet they still call it arm onset.

I mean, if I am at the point of visible atrophy from ALS, lifting dumbbells would probably be a far fetched idea huh?

Bingo. And that level of weakness would have been noticeable long before the atrophy was noticeable.

Hope this helps.
 
Hello all,

I have been lurking on this forum for about 6 months and I am finally getting the courage to post what I have been experiencing and my source of grief. I do apologize if this is a long post; I did try my best to condense it, but really couldn't as I don't want to leave any important details out. Thank you in advance for taking your time to read and any advice/info would be greatly appreciated. I am a 29 year old male from Toronto, Canada.

Last year at around this time I started an extensive workout program. Following this workout program I experienced twitching/fasciculations throughout my body (legs, arms, hands, feet, neck etc..), but didn't think much of it as I just related them to the demanding workout routine.

Twitching became more obvious and I developed a tremor on my left arm/hand, especially noticeable upon exertion. Left arm seemed to fatigue rather quickly which made this tremor worse. Naturally, I looked up these symptoms online and bumped into ALS and this forum, so I panicked. Stopped the serious working out around last August, but continued to test my strength (especially the left arm). I would normally do dumbbell curls with heavy weights, but important to note that since I was just randomly testing my strength(due to my fears) I didn't warm up my muscles at all.

Around October, I wake up in the morning and notice that a piece of my short head bicep (inside near the armpit) running up to the anterior/front shoulder seems to have been torn off. Shoulder no longer had that full roundness. Indentation (deep dent, not there before) on the bicep is very noticeable and I have what looks like fresh stretch marks at the site of concern. I realize stretch marks are caused by gaining muscle, but can also be caused by rapid loss of muscle which is what looks like happened in my case. :confused: Of course I panicked, thinking muscle twitching+visible muscle atrophy=ALS. I make an appt with my Dr. and still continue to test my strength. Strength doesn't seem too affected, but the arm tires unusually quick and I also get a mild pain at the bicep indentation and the shoulder area. To this day I get a mild pain around the shoulder/affected area and even feel it on what seems like the clavicle and surrounding bones. I also notice that my deltoid is no longer round and has lost some mass. Not completely gone but definitely flattened. Deltoid has progressed and I can safely say it is smaller than what it was about a month ago. Also, notice scapular winging when flexing my bicep/arm. Depending on my position, I can actually feel my scapula bone sticking out. This is very noticeable.

My Dr. examines me, does bloodwork, books me for an EMG and sends me to a Neurologist as he knows what my biggest fear is. I've had 2 EMG's on the left arm and 2 different neuro check ups. The EMG's were normal and the neuro appointment was also normal.

GP sends me for an ultrasound of the left shoulder. Ultrasound says:
"an irregular 8x4 partial tear, undersurface of the supraspinatus tendon insertion. Mild hyperemia on Doppler images shown. A small peritendinous effusion. The remaining rotator cuff, long head biceps and tendon and AC joint images are unremarkable. No impingement with movement." Not sure what hyperemia and small peritendinous effusion mean. Any info on that?

So here I am....with an atrophied left arm and now some scapular winging. Twitches are felt more than even and I am still concerned about an MND like ALS even though the Dr. says that both EMG's are reassuring that it isn't. I just want to know if it is possible for a shoulder injury, like the one presented in the ultrasound, to be the cause of atrophy of the shoulder, bicep, deltoid and scapular winging? This has been giving me alot of grief and anxiety and I am sick of being worried, but I can't help it since I see the atrophy everytime I look in the mirror and take a shower. Any ideas on what is going on? I intend to request an MRI just to see if there is anything else going on in the upper arm. Again, I do apologize for this really long message, but any suggestions are welcomed at this point. Thank you.

I was searching the net to find something on what the heck was going on with my shoulder and found your blog. You described the same thing that is going on with me. I lifted a heavy case of water and felt something go wrong and pain, but I have so much wrong with my body I ignored it. So did the ER. Well they told me to take pain meds. The pain and unability to lift my arm went on for a month. It wasn't until I realized my detloid had been "scooped out" that I started getting worried. By the way I have RA Ankolosing Spondolosis Fybromyalgia, blah blah blah. So I get ignored quite a bit by Dr's. So anyway what did you find out?
 
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