My turn to have fears

[JCurious]

Hi -

I am a 52 year old male - For completely different reasons (an experience with vertigo) I had an extensive neurological clinical test. This was two months ago, right after the start of the new year. That came back normal. This was the 'push against this; keep me from doing that' test.

Now, for an entirely independent thing. For a good 25 years, I have had pain in my left foot, on and off. This was diagnosed in the 1990s as a "neuroma" - but I get pain in my foot a lot, but also I get pain up and down the leg. Up in the hip, down to the knee. In the front of the calf. The foot itself. This can last a day or a few days; stuff like that. Like right now, it's rather CONSTANT. Pain pain pain.

So why am I here? A month ago, for about 36 hours, after I had a flu and was pretty much in bed for 4-days straight, I had a twinge appear in the side of my upper calf - just a couple of inches below the knee - it would happen like every 15-20 minutes. After that time, it completely stopped in that place. But then I noticed it happen a few times in my right leg. Then I felt a couple in my lower back. Then I even felt one on my left cheek (face).

Since then, I have done nothing but keep noticing if I have these. I focus on my feelings like mad. Many days, I feel none. Other days, I might feel 4-10 individual twinges. Never again in that specific place that twinged for a day, always randomly somewhere in the body. Left leg. Right leg. Back. Arm. etc. I don't feel any 'weakness' in that leg, but to be honest, during pain flareups in that leg, I tend to favor the other, as keeping weight on that leg HURTS. I will still walk up stairs and down them left leg first (the one in pain), as I have always done that.

Of course, when I consult 'Doctor Google' - it turns those under-skin twitches immediately to an ALS symptom (fasculations).

Am I nuts to think of ALS? Can ALS present itself as a result of pain that has occurred for many years?

Does a day of fasculations in one spot, not to happen in that spot again matter? Even if I am able to on some days since, notice 4-10 individual twinges all over my body? Like right now I noticed one on the side of my right knee. It felt like a little bubble pop.

I am not looking for definitive answers. I know a doctor is for that. But to be honest, this is all I have thought about in the past month.

A final thought: God bless all those who are really dealing with ALS. I know I might come across as a whiner.

 

[AfraidButNotAlone]

Probably not. Easy to get twitches without any MND.

 

[Nikki J]

You know , of course, that you should revisit your physician. The start of ALS is generally not an " I feel" but an " I can't". I have never heard of a prolonged prodrome of pain. In fact pain generally is a late development due to muscle weakness and immobility. Fasciculations are actual muscle twitches ( not sure if that is what you meant by twinge) . Random fasciculations are not concerning ( this last sentence is a direct quote from a leading ALS neurologist)

 

[Dusty7]

Shouldn't we have a sticky that we can just send "twitchers" to?

From The ALS Association

Ask the Doc: Q & A with Edward Kasarskis, MD, PhD

What Do Fasciculations or Muscle Twitching Mean?
Q: Many people who have muscle twitching worry that they have ALS since it’s often associated with the disease. If a person has muscle twitches a lot, or even daily, could it be the beginning of ALS?
A: Muscle twitching is very common, especially when people have had too much coffee, too much stress, or not enough sleep. Does this sound familiar?

Of course, the first thing many people do when they have a symptom is to run to the computer to see what Dr. Google has to say about it. I just did that and I got 1,390,000 results in 0.25 seconds. One of the first items that popped up was a Wikipedia definition leading to the term "fasciculations," (which means muscle twitching), suggesting the symptoms could be associated with ALS. And then of course it’s natural to panic. So if you were not under stress at the start before you went to the Internet, you certainly would be after consulting Dr. Google.

But take a breath. There are many things that can cause muscle twitching, including fatigue, anxiety, or even a pinched nerve in the spine. Muscle cramps, too, are very common, and can be caused by such things as over-exertion or even dehydration. Just watch any basketball game: it seems there’s always somebody on the floor dealing with a significant leg cramp.

Symptoms such as muscle twitching and muscle cramps don’t tell you much just by themselves; they are very common and non-specific. To diagnosis ALS, a physician needs to see signs of progressive muscle weakness.

What causes fasciculations? They originate at the very tips of the nerves, called axons, as they come close to being in contact with the muscle. The tips of the axons are thought to be overly sensitive to depolarizing (electrical firing), which is what triggers a muscle to contract. When a nerve fires, zillions of times a day upon request, an electrical impulse starts in the nerve, moves out toward the muscle, triggers the release of a chemical (acetylcholine) that "swims" across the gap between the nerve axon and the muscle, and binds to a receptor on the muscle causing it to fire. The complicated process itself takes a small fraction of a second. If any of this happens involuntarily, then the muscle fiber contracts without your permission and behold, a muscle twitch or fasciculation!

Some people with ALS wonder if the presence of muscle twitching means they have a bad or fast-moving version of the disease. In fact, having fasciculations doesn't correlate with how rapidly the disease progresses.

I would suggest most people with fasciculations or muscle cramps wait a few months although there’s no hard and fast rule -- before seeking a medical evaluation. Often the twitching or cramping will just stop on its own. If it doesn’t, it makes sense to get your problem evaluated.

An internist or a neurologist will ask you some questions, learn more about what you’ve been experiencing, and hold your limb in a relaxed position and study the twitching. He or she may then want you to have a muscle test (an EMG) to better understand what could be going on. Blood tests might be needed as well.

Often, the results will look normal but the doctor may suggest waiting a little longer to see if anything further develops over the next few months. Even in the 21st century, there is sometimes no instant test or procedure that can give you a clear answer about a problem. With fasciculations, this is certainly the case.

Waiting is a challenge for most people, but the odds are heavily in your favor that you don't have ALS. As they say, "common things are common," and ALS is not common, especially when compared to excessive caffeine use and stress.

 

[JCurious]

Thank you to all the kind people who read my note, and also to the very considerate people who replied.

I take all your comments to heart, and I did schedule a follow-up with the neurologist just to get his opinion over the issue - and please know my doing that is in no disrespect to the opinions given in the replies to this thread. But I know not to trust my own opinion in the matter, and ultimately I know the biggest calm to me will be seeing someone - in person - who is both knowledgeable and objective. I think you all have the latter two qualities in spaces, but the first, the in person, can't be done on the Internet.

I'm sorry to be so lengthy in this reply. I just want to thank those with ALS, and their caregivers, for reading my note, and for the replies.

 

[FSHolbrook]

I would think that if you were in the early stages of ALS you would find that you had muscle weakness; Furthermore, muscle twitching is not an indication of ALS. Muscle degeneration is. I would be totally glad that your neurological tests showed nothing. I first noticed muscle weakness and the footslap before I was diagnosed.

Rick