JakeinGranger
Member
- Joined
- Oct 13, 2014
- Messages
- 12
- Reason
- Learn about ALS
- Country
- US
- State
- IN
- City
- Granger
A couple of months ago I had my young children help me take the "Ice Bucket Challenge." Their laughter after the icy water hit me is something I'll never forget. The sheer joy in helping their dad and seeing my reaction was priceless. Here we are two months later though and I'm dealing with my own ALS questions.
I started having light, little muscle twitches about 3 weeks ago. They come on almost always when I'm at rest and while more have been in my upper arms, I've had them in my outer thigh, inner thigh, back, abdomen, cheek, shoulder and even glutes. A couple have "popped" my skin for a few seconds but most are just split second twitches. They come along every few minutes to every half hour or so, mostly in the evening. Don't notice them at all when I'm active.
At first I just assumed my lack of good rest from a busy work schedule and a lot of work related stress, as high as it has ever been, was the root of it. After 2-3 weeks though, I started looking online and, as we all know, ALS links popped up everywhere. My anxiety rose beyond belief, so I went to see my doctor.
As you'd expect, he felt ALS was an unlikely diagnosis, which didn't help me. Given the relative rarity of the disease, I'd guess all doctors start there. He then put me through some limb strength, reflex and coordination exercises that all checked out fine. In fact, he noted my strength as a "5" on a scale of "5." I left thinking, without signs of weakness, ALS was pretty unlikely.
I still decided to try to learn more about ALS and was shocked to see the variability of onset symptoms. While I can find some consensus from doctors that weakness is the leading onset, I can also find both personal comments and medical links saying fasciculations can present before weakness is noted. I can be assured from a doctor that generalized fasciculations without weakness are rarely indicative of ALS and then find links saying they can be. Internet responses are contradictory at every turn. I was back to square one.
I reached out to a specialist (neuro) who was kind enough to answer me with the following:
"I hope I can also reassure you that fasciculations alone, that is, without weakness is overwhelmingly much LESS likely to indicate ALS than a benign problem. I also agree with the statement that generalized fasciculations without weakness is also benign , and likely even more benign than focal fasciculations without weakness.
As you have found, there are some reports of fasciculations preceding the weakness but those are almost always self-reports, meaning that the patient's did not notice weakness. The absence of weakness or other neurological signs is usually not confirmed by an examination by a doctor, which is something you have the advantage of.
So, I think you can relax. Also, although it sounds back-to-front, the longer in time these fasciculations go on without you developing weakness the more likely they are to be benign. So if you are still having them off and on in 3, 5, 10 years, or more, without doctor-confirmed weakness, the better."
Feeling better after reading that this evening I went in to look up Pete Frates' story, who played college baseball for a friend of mine. In reading Pete's story, the first sign he noted was "feeling muscle twitches in my arms and chest." He didn't mention weakness at all at that point, only in the months ahead.
Back to square one again.
I even found a link where an ALS patient spoke of having generalized fasciculations that eventually settled into his right bicep with regularity but who did not have limb onset ALS but, rather, bulbar onset. I can't make any sense of that.
I'm at a loss. My strength feels fine. My doc checked it out to be fine. Yet, I do have these little twitches. Do I just sit and await weakness or get an EMG or just forget it all and live my life?
I started having light, little muscle twitches about 3 weeks ago. They come on almost always when I'm at rest and while more have been in my upper arms, I've had them in my outer thigh, inner thigh, back, abdomen, cheek, shoulder and even glutes. A couple have "popped" my skin for a few seconds but most are just split second twitches. They come along every few minutes to every half hour or so, mostly in the evening. Don't notice them at all when I'm active.
At first I just assumed my lack of good rest from a busy work schedule and a lot of work related stress, as high as it has ever been, was the root of it. After 2-3 weeks though, I started looking online and, as we all know, ALS links popped up everywhere. My anxiety rose beyond belief, so I went to see my doctor.
As you'd expect, he felt ALS was an unlikely diagnosis, which didn't help me. Given the relative rarity of the disease, I'd guess all doctors start there. He then put me through some limb strength, reflex and coordination exercises that all checked out fine. In fact, he noted my strength as a "5" on a scale of "5." I left thinking, without signs of weakness, ALS was pretty unlikely.
I still decided to try to learn more about ALS and was shocked to see the variability of onset symptoms. While I can find some consensus from doctors that weakness is the leading onset, I can also find both personal comments and medical links saying fasciculations can present before weakness is noted. I can be assured from a doctor that generalized fasciculations without weakness are rarely indicative of ALS and then find links saying they can be. Internet responses are contradictory at every turn. I was back to square one.
I reached out to a specialist (neuro) who was kind enough to answer me with the following:
"I hope I can also reassure you that fasciculations alone, that is, without weakness is overwhelmingly much LESS likely to indicate ALS than a benign problem. I also agree with the statement that generalized fasciculations without weakness is also benign , and likely even more benign than focal fasciculations without weakness.
As you have found, there are some reports of fasciculations preceding the weakness but those are almost always self-reports, meaning that the patient's did not notice weakness. The absence of weakness or other neurological signs is usually not confirmed by an examination by a doctor, which is something you have the advantage of.
So, I think you can relax. Also, although it sounds back-to-front, the longer in time these fasciculations go on without you developing weakness the more likely they are to be benign. So if you are still having them off and on in 3, 5, 10 years, or more, without doctor-confirmed weakness, the better."
Feeling better after reading that this evening I went in to look up Pete Frates' story, who played college baseball for a friend of mine. In reading Pete's story, the first sign he noted was "feeling muscle twitches in my arms and chest." He didn't mention weakness at all at that point, only in the months ahead.
Back to square one again.
I even found a link where an ALS patient spoke of having generalized fasciculations that eventually settled into his right bicep with regularity but who did not have limb onset ALS but, rather, bulbar onset. I can't make any sense of that.
I'm at a loss. My strength feels fine. My doc checked it out to be fine. Yet, I do have these little twitches. Do I just sit and await weakness or get an EMG or just forget it all and live my life?
