KevinM
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- Mar 30, 2019
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Hello to all my brothers and sisters. A cloudy afternoon, so a good time to ruminate on some issues that have been rattling around for a while. I have been wanting to post my thoughts on these two issues for some time, because I believe that they are often dismissed or minimized in ALS literature. My comments derive not just for this forum, but from many other medical journal articles, other forums, and personal experiences of many PALS that I read about or with whom I have communicated.
I hope (and eagerly anticipate) a healthy give and take here about my observations. Mature dialogue and counter arguments are the cornerstone of knowledge, so I’m looking forward to everyone’s thoughts.
Let me also reassure all the DIHALS posters that theresponses you receive from our forum moderators or other members on these topics accurately describes the exceedingly low likelihood that any of you have ALS, so please don’t freak out after reading this post. These are only my observations.
Let’s start with pain. Pain is quite complicated, because what might be very painful to me might be tolerable to someone else, and hardly worth mentioning. Pull up virtually any generic article about ALS on the web, however, and it will indicate that ALS is not usually painful. If there is pain the articles say that it usually occurs in the later stages from immobility or from secondary problems such as contracture, bed sores, etc.
I find this to be a very broad generalization, and there are many, many PALS that describe pain in the early stages, and often prior to diagnosis. However, even this is a bit tricky, because I suspect that much of the medical literature Is differentiating between “primary pain” and “secondary pain.” Motor neuron death (primary) is not in itself painful, whereas cramping and muscle pain (secondary) is very painful. I can provide a very lengthy list of PALS that describe their initial symptoms being accompanied by pain (“my first symptom was pain in my right hand after bowling with my daughter,” or “my hands painfully cramped” after writing or performing surgery, as examples). Also, look no further than recent posts here from PALS that have experienced pain at the outset or soon thereafter.
Does that mean that every persistent ache, pain, or cramp is a possible precursor to an ALS diagnosis? Of course not, but it is incorrect to presume that pain is not present for a significant group of PALS, even in the early stages. Personally, I am still in what the literature describes as early stage ALS, but I have increasing, constant aching (pain to me) throughout my shoulders, neck, and lower back, and hip. This is not from immobility, but counterintuitively, because I still have mobility. The use of weakening muscles creates the pain.
As my muscles slowly weaken, certain activities and motions with my shoulders or right leg causes immense short term pain that gradually subsides if I don’t repeat that motion, but it is still very painful and it never totally resolves. For me and many others, pain is a very real symptom of ALS, well before the immobility stage. Of course, there are many PALS that never experience pain of any degree; parts of their body just stops working the way it always has.
BOTTOM LINE: Pain is a very real component of the disease for a significant number of PALS, well before the loss of mobility.
Now to fasciculations, certainly at the top of DIHALS concerns. Let me assure all you young twitchers that the sticky posted on this forum is absolutely correct, with only minor modifications that I think should be incorporated, ALS is rare (exceedingly rare in those under 30), and twitching is very common, non specific, and in the vast majority of cases due to a myriad number of other, treatable causes. Twitching alone is not a basis for an ALS diagnosis without an accompanying EMG, bloodwork, MRIs, and clinical exams that that detect weakness in one or more muscles.
Benign fasciculation syndrome, which is often diagnosed absent other positive tests, is probably the correct call for anyone under age 40, especially if there is a prior history of twitching. DIHALS under age 40 experiencing fasciculations, whether intermittent or constant, can probably sleep well at night knowing you don’t have ALS. There are always rare exceptions, but odds are HEAVILY in your favor it is not motor neuron disease.
But here is the caveat. At least two peer reviewed medical articles raised a red flag if a patient, almost always between age 50-60, suddenly develop “florid” fasciculations with no prior history. The articles indicated that in a number of these cases, fasciculations were the first symptom, preceding by months or even years weakness and atrophy. And the number of PALS-especially in that age group—that reported fasciculations as their first symptom is extensive.
In my case, I developed full body twitching several months before any clinical weakness was identified, after two separate neurological strength tests that showed normal strength and two abnormal but inconclusive EMGS. It wasn’t until five months after I started twitching that a clinical exam showed tricep weakness (of which I was not aware).
The point here is that most all fasciculations are indeed benign as described in this forums sticky posts, But if you are over 45 and suddenly develop them, pay attention and don’t procrastinate obtaining additional tests.
Ok, it is approaching nap time, so enough for now. I wanted to stimulate thought, conversation, and personal experiences. That is what this forum does best, Kevin
I hope (and eagerly anticipate) a healthy give and take here about my observations. Mature dialogue and counter arguments are the cornerstone of knowledge, so I’m looking forward to everyone’s thoughts.
Let me also reassure all the DIHALS posters that theresponses you receive from our forum moderators or other members on these topics accurately describes the exceedingly low likelihood that any of you have ALS, so please don’t freak out after reading this post. These are only my observations.
Let’s start with pain. Pain is quite complicated, because what might be very painful to me might be tolerable to someone else, and hardly worth mentioning. Pull up virtually any generic article about ALS on the web, however, and it will indicate that ALS is not usually painful. If there is pain the articles say that it usually occurs in the later stages from immobility or from secondary problems such as contracture, bed sores, etc.
I find this to be a very broad generalization, and there are many, many PALS that describe pain in the early stages, and often prior to diagnosis. However, even this is a bit tricky, because I suspect that much of the medical literature Is differentiating between “primary pain” and “secondary pain.” Motor neuron death (primary) is not in itself painful, whereas cramping and muscle pain (secondary) is very painful. I can provide a very lengthy list of PALS that describe their initial symptoms being accompanied by pain (“my first symptom was pain in my right hand after bowling with my daughter,” or “my hands painfully cramped” after writing or performing surgery, as examples). Also, look no further than recent posts here from PALS that have experienced pain at the outset or soon thereafter.
Does that mean that every persistent ache, pain, or cramp is a possible precursor to an ALS diagnosis? Of course not, but it is incorrect to presume that pain is not present for a significant group of PALS, even in the early stages. Personally, I am still in what the literature describes as early stage ALS, but I have increasing, constant aching (pain to me) throughout my shoulders, neck, and lower back, and hip. This is not from immobility, but counterintuitively, because I still have mobility. The use of weakening muscles creates the pain.
As my muscles slowly weaken, certain activities and motions with my shoulders or right leg causes immense short term pain that gradually subsides if I don’t repeat that motion, but it is still very painful and it never totally resolves. For me and many others, pain is a very real symptom of ALS, well before the immobility stage. Of course, there are many PALS that never experience pain of any degree; parts of their body just stops working the way it always has.
BOTTOM LINE: Pain is a very real component of the disease for a significant number of PALS, well before the loss of mobility.
Now to fasciculations, certainly at the top of DIHALS concerns. Let me assure all you young twitchers that the sticky posted on this forum is absolutely correct, with only minor modifications that I think should be incorporated, ALS is rare (exceedingly rare in those under 30), and twitching is very common, non specific, and in the vast majority of cases due to a myriad number of other, treatable causes. Twitching alone is not a basis for an ALS diagnosis without an accompanying EMG, bloodwork, MRIs, and clinical exams that that detect weakness in one or more muscles.
Benign fasciculation syndrome, which is often diagnosed absent other positive tests, is probably the correct call for anyone under age 40, especially if there is a prior history of twitching. DIHALS under age 40 experiencing fasciculations, whether intermittent or constant, can probably sleep well at night knowing you don’t have ALS. There are always rare exceptions, but odds are HEAVILY in your favor it is not motor neuron disease.
But here is the caveat. At least two peer reviewed medical articles raised a red flag if a patient, almost always between age 50-60, suddenly develop “florid” fasciculations with no prior history. The articles indicated that in a number of these cases, fasciculations were the first symptom, preceding by months or even years weakness and atrophy. And the number of PALS-especially in that age group—that reported fasciculations as their first symptom is extensive.
In my case, I developed full body twitching several months before any clinical weakness was identified, after two separate neurological strength tests that showed normal strength and two abnormal but inconclusive EMGS. It wasn’t until five months after I started twitching that a clinical exam showed tricep weakness (of which I was not aware).
The point here is that most all fasciculations are indeed benign as described in this forums sticky posts, But if you are over 45 and suddenly develop them, pay attention and don’t procrastinate obtaining additional tests.
Ok, it is approaching nap time, so enough for now. I wanted to stimulate thought, conversation, and personal experiences. That is what this forum does best, Kevin
Well I've already related my thoughts on pain. I had more mental than physical pain when this fakakta (a yiddish word) disease made its presence known in me. Then I went on my SSRI and the mental pain subsided. I still get physical pain occasionally but much less than what you report. I am stubborn just like you and Kim and will continue to do fun activities despite the ramifications on my weakened arm/hand muscles. I'll have plenty of time to read and do sedentary things when my limbs stop working, whenever that is! I embrace, with gusto, Kim's sentiment that "the mood lift benefit outweighs the pain". There are some white flags I've had to raise though, such as basketball and long distance bike riding. The latter is just too much for my arms to take, though I've replaced that activity with roller blading along the beach path which releases similar endorphins for me.
At some point I came to the realization that "florid" fasciculations were exactly what I had, no matter how much I tried to convince myself that I was in a gray area. And then weakness, atrophy, and "failing" came later.
