I’m waiting for my EMG and I’m driving myself crazy.

[JB3245]

First of I would like to start off by saying I’ve seen ALS first hand and my heart goes out to all who are dealing with it. I have been endlessly reading on this forum after my “symptoms” started and I just can find what I would relate to.

I started out having muscle twitches all over my body. Mostly in my bicep which seems to come and go when it pleases. But recently my left leg has been non stop. They are visible in my foot and calf and my left calf seems to be smaller than the right. Over the last week the twitching has started in my right thigh and right buttocks. Twitching has also started in my ribs front and back.

I saw a neurologist last week who seemed surprised by my twitching stating it was multiple motor points and warranted an EMG when scheduling called and said October was the soonest they had she asked if he wanted it sooner than later. I replied I was not sure so she called him. When she called back she said they would make the appointment for August. I feel like this implies he is concerned…

I don’t seem to have toe drop or balance issues but the fasciculations are not stop now it seems and they spread all over my body very quickly.

Any input from people who know this disease would be much appreciated.

 

[Nikki J]

We obviously don’t know the doctor’s thought process it could be as simple as wanting to resolve this quickly so you won’t worry!

I can’t imagine that you couldn’t find endless stories of people twitching over, hot spots and reports of 24 /7 twitching. The combination is common in bfs and I feel like I have read it thousands of times here - but those people never report a diagnosis of als. They either disappear or report normal emgs You can also find them on reddit r/ muscle twitch and other places

I am amazed that a practicing neurologist was surprised by all over twitching given its prevalence. I wonder if they really were or if it was more an attempt to validate your experience

 

[JB3245]

I agree but I am not one to embellish on symptoms. In fact if anything after I left I felt like there was more I should have told the neurologist but I’m constantly reminded by people close to me that “it’s probably nothing”, so I didn’t want to sound like I wanted a diagnosis. I said Here’s my twitching and I can’t think of anything that is causing it. I forgot to mention that while pumping gas one day I almost fell over while just standing there. I forgot to mention that my left leg is noticeably smaller than it was months ago. I didn’t mention that I have aches in the arch of my foot and shins. I don’t want to hear someone say I think you have ALS.

I know many people have twitching and it’s benign. The last thing I want to do is be insensitive to people who are truly dealing with ALS.

One thing I can’t find is how fast the twitching spread through the body for people. Is seems as the days go by it’s noticeable in other places more frequently aside from the constant left leg.

 

[Nikki J]

All sound consistent with bfs to me.

Almost fell over once? My first symptom was falling. No almost about it. And from then on it happened EVERY time I did that particular movement.

Please let us know the emg results. Sorry you are going to worry until then. Assuming that is negative I hope you will be able to let this go and not end up in the als worry rabbithole

Good luck

 

[annlee]

I am not a doctor, but I do have personal experience in living with this disease for 5 years. I am sharing from my personal experience, which I hope is helpful.
*ALS twitching does not spread throughout your entire body quickly. Anxiety twitching does. I have had the massive "all over" twitching that you and others describe. (After a work place shooting that left 6 dead.) It is nothing like ALS twitching, in my experience. My ALS twitching has been mild in some areas and very strong in others. It is in the same exact muscle, or a few, and does NOT move around randomly. It stays in the same place for many, many, many months. When it finally stops twitching, that muscle no longer works. It does not "feel different". It does not work! "I cannot" roll over, lift my leg or foot, scoot my feet, raise my butt off the bed, raise my arm, no matter how hard I try etc.
* Regarding one leg being smaller than the other- one eye is likely smaller, one arm, finger calf, thigh etc. Our bodies are not the same size on both sides. When you have lost enough muscle to "be smaller", it will be very dramatically visible to anyone., and it will not function the same.
* If you say, "you are not sure you have", "I might have", "it FEELS like", "I think I have", "it seems like"- ODDS ARE IN YOUR FAVOR. When you truly have muscle weakness, foot drop, curled toes, or other common issues, you will KNOW IT.
*When your muscle gets weak, it does not work the same. It's not just a "feeling". When you are picking your lower leg up with your hands to cross your legs because no amount of effort can lift it up- that's muscle loss.
*ALS is vary rare. Odds are always very much in your favor that you do not have ALS.
As you pursue finding the cause of your symptoms, try to reevaluate your life and totally embrace living. If anxiety is a challenge for you, seek treatment and stay with it! Anxiety can steal your happiness and destroy your life. That is a very treatable condition, yet many people just "live with it". Keep moving forward to become the best version of yourself regardless of any obstacles that come your way. We are stronger than we think. Best of luck to you, as you wait for answers.

 

[JB3245]

Thank you, I greatly appreciate you sharing with me. I recently graduated the police academy at 34 and started my dream job. Life has not given me anything to worry about per se, but I suppose there could be stress or anxiety I’m not giving the attention I should. Maybe it’s the ups and downs of adrenaline from the job? Maybe it’s the stress of being buried in reports from anything ranging from pursuits, drownings, car crashes… I don’t know. I’m typically super laid back and the one my wife comes to when things are hard I always have a solution and can remain calm. I’ve tried to convince myself this is a pinched nerve from the weight of my vest or wearing my duty belt too tight but it all started so fast I can’t pinpoint when exactly. I know it’s more likely I’m in my head right now but it’s very hard when there is very little info to explain why it feels like popcorn under my skin all over and the calves and arch of my foot look like someone flicked a piece of jello and it never stopped moving.

I’m not one to get anxious over my health but I read that BFS is usually localized and ALS twitching spreads. I just don’t know how fast it spreads, if it starts and stops in certain places and continues in others. Like I said before my bicep is totally random throughout the day but my leg and foot is constant, my ribs are sporadic and my right leg feels sporadic as well. I have read things that say twitching comes before weakness and atrophy and vice versa so I don’t know what to think. Again I appreciate the reassurance.

Again my heart goes out to out to people living with ALS and families. In my previous marriage a close family friend went through it and I commend the strength of everyone involved.

 

[annlee]

Thank you for your service and the sacrifice your family makes to help make this a better world for everyone. If you can manage the stress of your job, you can handle anything! I think the reason you see so many different views about this disease is because it varies a great deal from one individual to the next. It is rather unpredictable. The journey is very different and very similar at the same time. I hope you get the some answers and resolution to your concerns quickly. Let us know your EMG results. Best of luck.

 

[JB3245]

I would like to add to this for anyone following your input is appreciated.

My feet are constantly twitching “fasciculating”. My calves are constantly doing the same. The twitching everywhere else is still there. Ribs, back, arms (mostly biceps and triceps), pectoral, my jaw and lips are twitching as well.

My left calf is significantly smaller than my right and is weaker than the right. I don’t seem to be having trouble walking and can tap my toes but I feel like I’m losing feeling in the left leg. It just feels dull.

I’m very aware that a lot of twitching is benign and can be related to other things but I’ve been taking vitamin e, cut caffeine out of my diet and have tried to be as stress free as possible. My marriage is good, money situation is good, I have my dream job and everyone is healthy in my family. Life is good. I keep telling myself that as a 34 year old W/M the odds are in my favor that’s it’s not ALS. That being said the chances are not zero. I said before I typically don’t get worked up about health things but clean bloodwork and a clear MRI. Don’t give me to much reassurance.

Everything I have seen on BFS indicates localized twitching, and not persistent, which is how it presents in people I know who have it. It’s a single calf muscle or something like that. At the same time I find it hard to believe the twitching would be widespread without other problems in at least one side such as tripping or falling.

No cramping other than my 3 middle toes on my left foot.

My neurologist called me personally and told me he’s a bit puzzled because of the fact that the twitching is so widespread and I’m not having cramping and that the EMG will tell us more. But waiting until August 11th is going to drive me insane.

Nothing I am doing is helping.

Your replies are greatly appreciated.

 

[lgelb]

You are still describing benign twitching, for me -- having some consistent sites but also some variability, and it also presents as more random and widespread. It is incorrect that it can only be localized to a few sites.

The people you know do not span the whole of the condition of BFS, and you can verify this by reading more posts about it using the search function here. You will see many threads in "Could It Be" where someone is twitching as you are, maybe some cramping, is otherwise healthy, has no functional limitations, and if they see it through to the end, instead of chasing something like ALS (I am not saying you are, but that some do), they find that in fact they can be diagnosed with BFS.

Clean bloodwork and a clean MRI are not what's ruling ALS in or out.

I would really still look at your sleep, diet and hydration. Your job is stressful and on the go. Your nutrition/sleep "bank" if you will may've slipped without your being fully aware, and this can have a great effect on twitches.

 

[JB3245]

I greatly appreciate your reply. I hate to depend on people who are truly dealing with ALS for reassurance but the replies from people who know more about it than me are appreciated.