Curious About Localized Symptoms Over 6 Weeks

Hi everyone, I’m having some symptoms lately and while I don’t think it’s ALS, they are still concerning and I was hoping that someone here would be able to provide some insight.

My symptoms are constant, 24/7 twitching, fatigue, and soreness in both calves for nearly 6 weeks. It does not go away at rest and is much worse after any physical activity, such as walking up steps or walking the 500 meters to my train station. The twitching is localized to my calves and looks like a rippling/wave. Over the past two weeks my calf muscles have been cramping daily and the muscles above my knees have started to feel tight and fatigued.

For a bit of background, I am a 36 year old male and who has been doing long distance endurance training for 12 years. In a typical week I run between 40 and 90 kilometers and have participated in a lot of marathons, ultra marathons, trail races, and brevets (long distance cycling events). In the past 12 years of doing this I have never had a problem with twitching, cramping, or overall fatigue (after a race, yes, but not in general).

On May 16-17 I competed in a 100 kilometer ultra trail run race and finished without a problem. I took the following week off, and on Saturday, 24 May I cycled for 70 kilometers. The next day, I went on a 25 kilometer trail run with some friends. When we got done, we were at a river and all took our socks/shoes off to walk in the river and cool off. When I took my socks off (they are long compression type socks that go up to your knee), my calves were twitching like crazy. They haven’t stopped since.

At first I thought it was just overuse, with the running, cycling, and ultra trail run the week before. Even though I’ve never experienced the twitching before, maybe the 12 years of doing this was catching up to me. I took a week off from any exercise but it still didn’t get better. My calves were still twitching constantly. When I sleep, when I sit down, when I move - at any time.

After another week off, I was getting depressed from not running so I decided to go on a short run. At about the 5 kilometer mark my calves started to hurt, feel very tight, and felt like they were being constantly electrocuted. I stopped, looked down, and they were rippling/twitching so much it looked like something was going to burst out of them.

I took another few weeks off, and two days ago went for a short trail run. While I was able to run, my calves were twitching/rippling worse than ever. I knew my calves and legs did not have as much strength and energy as they normally do because I was struggling up a small mountain and had no confidence in my calves. I felt that they could give out at any moment. An outside observer might think I look fine, but I know myself and my strength level and I was far from normal.

It has now been about 6 weeks that I’ve had this constant twitching. Over the past 2 weeks my calf muscles are stiff and have been cramping, I feel fatigued, and my calves and now thighs are very sore. It feels like I’ve ran a marathon every day, even though I've done minimal walking. The twitching happens when moving or at rest, but is much worse when moving. It’s best when I first wake up in the morning, where it is still present but not as bad as the previous night. Once I start moving around it gets worse and by the end of the day it is really bad. Just regular activities like walking around the office make the twitching, stiffness/tightness, and cramping worse.

I’ve seen a GP, orthopedist, and two neurologists. It’s been hard for doctors to take me seriously because they all attribute it to my exercise. One didn’t even ask to look at my calves to see the twitching, announcing quickly that it was just muscle fatigue. But I know my body and I have been doing long distance endurance exercise for a long time without any problems. I know this is not normal.

Two weeks ago I finally saw a neurologist who took me somewhat seriously and ordered a blood test and EMG, along with the basic reflex/strength tests for my legs. My reflex/strength and blood test came back normal (though I know my strength is not at its normal level) and now I am waiting on an EMG next week. He prescribed me some muscle relaxants in the meantime which have not helped at all.

Apologies for the long description, but has anyone here had similar symptoms, and if so, how did it turn out? I don’t think it’s ALS, but I’m slightly concerned because the twitching happens at rest or when moving, has gotten worse, and my calf muscles are now very fatigued, tight, cramping, and sore. I know the EMG will likely tell me a lot, but in the meantime I have been trying to think about a logical cause for my symptoms.

After a bit of research I’ve learned about BFS and ALS, but it appears that BFS twitching is all over the body and comes and goes and does not occur during exercise/use. Mine is constant (including during muscle use) and localized to my calves, which has made me a little curious and concerned as to the cause.

Thanks in advance for any insight, help, or advice your could provide and my apologies for the long post.

fwiw, it does not sound like ALS or MND, but find a good neuro and double test!

your English is great btw

I used to live in Shinjuku ...

ACRONYC: Your symptoms don't sound like ALS at all. Listen to your doctors.

MAX: We have so much in common. I lived in Yokohama.

All your symptoms are, of course, ALS symptoms. And your history of extreme exercise puts you at higher than normal risk of developing ALS. If your EMG is normal, get another one in 6 months to see if there are any changes. If there are no changes, you can begin to stop worrying about ALS if no other symptoms develop.

If it turns out that you are OK, I think you should quit exercising and putting yourself at risk of developing ALS. New studies have shown that endurance running also damages the heart. Another reason to stop exercising.

How are your knee reflexes? You can test those yourself.

Please consider the source when you read the responses here. If you have time you might find it interesting to read the stories of the responders. Look at the threads they have started I would disagree that all your symptoms are those of ALS they are non specific at best. An EMG will certainly give you more information and I hope reassurance. The role of exercise in the development of ALS is controversial and there are studies that will support every viewpoint. I recently read one that seemed to indicate benefit of mild exercise in those who already have ALS and postulated that there was actually a beneficial biochemical reaction.

>MAX: We have so much in common. I lived in Yokohama.

and

Kiln Green Berkshire UK
Al Khobar KSA
Balgach CH
Munich D

Cool Targa Max! I always liked them but never could fit in one......................

>Cool Targa Max! I always liked them but never could fit in one......................

me too, but I had this one custom built when we lived in Munich -- in those days I was printing DM's

btw, Sandy was t-boned in it, totaled it :-(

Acronyc, if you are new to the Forum and unfamiliar with the layout...

To read members posts go to the left of this page, above their bio info click on their screen name in blue, when their page opens click on "View Public Profile". To the right of the "Visitor Messages" tab is a "Statistics" tab, click on that. You'll see "Find All Posts By..." and "Find All Threads Started By..." Just a suggestion.

There is a world of difference between having symptoms that are sometimes seen in ALS, and having ALS.

Listen to Nikki; unfortunately she has seen more ALS than anyone should have to deal with, but it has made her quite knowledgeable... much more than other commenters who have not even been diagnosed with an MND.
As she says, "I would disagree that all your symptoms are those of ALS they are non specific at best. An EMG will certainly give you more information and I hope reassurance. The role of exercise in the development of ALS is controversial and there are studies that will support every viewpoint."

Get your EMG and be prepared to ask your neuro lots of questions. Then listen to your him.

>Get your EMG and be prepared to ask your neuro lots of questions. Then listen to your him.

and try to find an ALS specific neurologist. There may be one at the clinic between the underground entrance and the Century Hyatt. Tokyo Medical University, 6-1-1 Shinjuku, Shinjuku-ku, Tokyo 160-8402

Hi everyone, my apologies for the delay but I want to thank you all for taking the time to read my long post and for your comments. They are really very helpful and I am grateful.

The consensus I am seeing from your comments is that it is likely not ALS, and that is a comforting thought. My symptoms have been getting worse this week, with the twitching now extending to my feet. I can see and feel the twitches in the arch of my right foot, but can only see them in my left foot, not feel them. If I am still for a long time the twitching is less extreme, but any kind of normal day-to-day walking makes them go crazy.

I've also been feeling a tightness/stiffness, almost like a burning after a workout, in both calves. This has been getting worse this week. Is this similar to the spasticity I've read about? Or is that something else? I get tired very easy from walking right now, which is frustrating.

I guess one of the biggest reason for my concern was when I saw the neurologist that scheduled my EMG, he said that constant twitching at rest or when moving is a common early MND symptom. This worried me, and then I started thinking about the few times I've tripped on flat surfaces over the past months and occasions that I had trouble saying some words.

Anyway, I will have my EMG on Monday and luckily will be able to get the results the same day. Hopefully that will be able to tell me something.

Max and Atsugi, it's a very small world that you both lived in Tokyo! I'm actually from the US but I've been living in Japan for 14 years now.

Thanks again to everyone. I'll make an update here once I get my EMG results on Monday.

"I've also been feeling a tightness/stiffness, almost like a burning after a workout, in both calves. This has been getting worse this week. Is this similar to the spasticity I've read about?"

No, spasticity is more than just tightness. A defining feature of spasticity is that the increased resistance to passive stretch is velocity-dependent. So, it's not something I think you can diagnose in yourself, but you can ask your neuro if you have any signs of spasticity when you get your EMG. Good luck!

Hi everyone, thank you again for the comments and to Dusty7 for the explanation of spasticity. Today I had my EMG/NCS and was hoping I could get some input and advice about my next step.

My NCS came back without any problems, which was good. As for my EMG, the doctor tested three different areas of each calf and my foot. The test results showed “fasciculation potential” in all areas and the doctor made a note that I have suspected Isaac’s syndrome or cramp & fasciculation syndrome (CFS). However, the neurologist also told me that people with Isaac’s usually have high levels of GAD (not sure what this is) but mine were normal, so she thinks that I don’t have Isaac’s but likely have CFS.

I asked the neurologist specifically about ALS, and she said that because I don’t have any other symptoms right now such as clinical weakness, slurred speech, or reflex problems, she doesn’t think I have it. But she also said that the only way to know is to see if I develop any other symptoms over the coming months.

She also told me that there are a lot of other diseases I could have with such symptoms and wants to run a battery of tests on me, including MRIs, a spinal tap, and muscle biopsy. Since there are many tests, she recommended that I spend a week in the hospital to get these tests done.

I have two questions. First, what is“fasciculation potential’? I forgot to ask my neurologist about this and is it something I should be concerned about?

Second, while I am thankful that I have insurance that will cover a week of hospital tests, I am wondering if I should get a second opinion before doing so. Would this be wise, or is it just better to go in and get all of these tests?

Thanks again for any advice or comments and my apologies for the long post.

>I am wondering if I should get a second opinion before doing so. Would this be wise

yes! you might try:

Tokyo Metropolitan Institute for Neuroscience
2-6 Musashidai, Fuchu, Tokyo 183-8526, Japan