Widespread Fasciculations- Please help!

[bobajojo]

Hello, I'm new to this forum and I apologize because I have not been diagnosed with ALS. However, I'm dealing with intense anxiety and was hoping to get some information.

About 2 months ago, I noticed continuous fasciculations in my right calf. Two weeks later, it was in both calves. Non stop, all day, every day, like nerves firing off everywhere. Now, the twitches are widespread (legs, feet, butt, back, arms, shoulders, neck). I have several muscle groups firing off simultaneously and it never stops. It's been two months since I first noticed them.

I had a neuro exam this week and the doctor said "I can't tell you it's not ALS, but we'll have to wait and see." I have no weakness or balance issues. He did notice some hyperreflexia but it was bilateral. I have an MRI and EMG scheduled in a couple weeks. But the anxiety behind all of this is unbearable. I'm a new dad and I'm scared to death.

Has anyone had similar symptoms? I realize that ALS is a disease of weakness (which I don't have) but I've read on many websites that diffuse fasciculations are an initial symptom. Any infomation would be much appreciated. -Matt

 

[ScarlettK]

Hi Matt, welcome to this site. I am fairly new here also, but I can tell you that you will not find a more caring and compassionate helpful bunch of wonderful people here. The tests you will be having will determine your diagnosis. The "hurry up and wait" part of reaching a diagnosis is very nerve wracking. Unknown factors are so difficult. Everyone here is or has gone through what you are feeling. Stay focused on that new little one in your life. I will be praying for you to find some peace from the anxiety. You are never alone spiritually or physically. Someone is always here for you. Love in Christ... Kaye

 

[ktmj]

bobo if it will relieve your anxiety I would bet all my material possessions "all in" that it is not ALS.

Twitches are disconcerting and scary at first, but I too started with body-wide fascics - 22 years ago.

And I don't have ALS.

 

[bobajojo]

Thank you for your replies. I'm so nervous because I'm 38 years old and I've never seen anything like this. Like I said, it's been about 2 months and the fasciculations have gotten worse. I just can't imagine them stopping all of a sudden. Before the twitching started, I had about 3 months of frequent headaches in the back of my head and in my temples... and a lot of neck cracking when I turn my head. I still get it today, although the headaches have gone away. I wonder if something with my spine/ upper neck could cause widespread fasciculations. Has anyone had anything like that? I'm scheduled for an MRI in July 11th so maybe it'll show something.

I also realize that stress can play a big role, and admittedly, I'm overly stressed when it comes to my health. I'm going to see a therapist next week to try to deal with the anxiety. Any other information would be very much appreciated.

 

[Robynnblue]

Hi boba, welcome. I think you very much sound like an early case of BFS (Benign Fasciculation Syndrome), its a very un-nerving little syndrome in the beginning mostly because several of its symptoms can closely mimic that of actual neurological disease. But there is always one important fact missing "clinical weakness", alot of BFSers feel weak but it never turns out to be clinical weakness.


Many, many (but not all) BFSers, start out with calf twitches and they then quickly spread to the rest of their body. You also seem to have the anxiety link going on as well, which is oh so common among BFSers and takes a little bit to get past, but you will. There is a website for BFSers called AboutBFS.com, you should check it out, as you will find many stories there that sound just like yours, trust me.

Good luck with your testing,but I think you are going to be fine. Let me know if you need any more info on BFS, I'll help as much as I can.


Take care and relax a little8)

Robynn:-D

 

[kmendsley]

I'm sorry your neuro said such a statement to you before more tests/more time has happened. Really doesn't help one with anxiety now does it? I had the same statement from a dr. and had to wait for 3 months for the scheduled EMG...you can imagine how fun those months were. Anyway, since you don't have weakness, like you said it doesn't follow ALS. Basically the only thing you can do at this point is wait patiently for your MRI and EMG. Take a breath and enjoy 'not being diagnosed' at this point Oh and you should never be sorry that you have not been diagnosed, your worries are sound, with where you are as far as diagnostic tests go. I hope it is something else for you that can be cured...keep us updated.

 

[bobajojo]

Thank you all for your replies. I'm trying my best to keep my mind off it. As many of you know, that's not so easy because the twitching is a constant reminder that something doesn't seem right. At night when I try to fall asleep, they get stronger and are more like jerks than twitches. I've had my elbow pop up, my jaw pop open, my ankle move.. etc. But I'm taking all your words of encouragement to heart and although the twitching is out of my hands at this point, I can at least try to lessen my anxiety so that's what I'm going to do (or try to do). Thank you again. I'll keep checking this thread and will send out any updates because maybe it will help others to understand this strange thing that our bodies do. -Matt

 

[notme]

Thank you for your replies. I'm so nervous because I'm 38 years old and I've never seen anything like this. Like I said, it's been about 2 months and the fasciculations have gotten worse. I just can't imagine them stopping all of a sudden. Before the twitching started, I had about 3 months of frequent headaches in the back of my head and in my temples... and a lot of neck cracking when I turn my head. I still get it today, although the headaches have gone away. I wonder if something with my spine/ upper neck could cause widespread fasciculations. Has anyone had anything like that? I'm scheduled for an MRI in July 11th so maybe it'll show something.

I also realize that stress can play a big role, and admittedly, I'm overly stressed when it comes to my health. I'm going to see a therapist next week to try to deal with the anxiety. Any other information would be very much appreciated.

Hi

If you've read some of the older threads, someone posted almost this exact same scenario a month or so ago. Down to and including the Doctor's comment.

It is much more likely that cracking in your neck and neck pain are something in your cervical spine. This is definitely NOT an ALS symptom. C-spine issues very frequently cause the type of symptoms you've been having--the headaches and crackling. Depending on the issue there, they can and do cause problems in all limbs. For instance, cord compression can cause symptoms in the legs.

Your age makes cervical issues not at all uncommon. As the others have told you, fasciculations really aren't how ALS presents. The fasciculations occur, actually, after damage has already been done (in ALS) due to the denervation and re innervation. If you had ALS, you would almost certainly have some form of weakness associated with them. Did he find some symptom that even would make him say that--or did you ask him if it was possible. If you asked him--of course he would say it's possible. It's possible for anyone to develop ALS--about 1 in 100k possible. But, he should have also added extremely unlikely given your lack of weakness and the cervical spine issues.

Necks don't crack and cause headaches without something going on. It can even be something that PT can help, especially with the headaches--as those are more than likely muscle spasm, which I can tell you from personal experience can be really severe.

The random muscle jerks, again, are quite common in people as they lie down to sleep. I've had them wake me up even--for years.

Your MRI will give you answers, I'd bet on it. Definitely stress can cause muscles to spasm.


(by the way, I speak from personal experience regarding the cervical issues. I've got several bad discs and facet issues and other assorted spine problems--I'm 50 now, but they began when I was in my late 20's.
Don't worry. Good luck to you

 

[Marvelli]

I really identify with bobajojo here. My symptoms are very similar to yours, and I am two years younger.

I have had twitching and jerks and fasciculations of various sorts for about 8 months now. Almost every type, from the usual rippling ones in the calves to real jerks that lift my elbow or leg just as you describe. It started not long before Christmas, and it really freaked me out. I would say that it was the worst Christmas I have ever experienced. I probably made myself more sick with worry.

I visited the neurologist in January and had an EMG later that month. Thankfully, all was clear. However, the twitching continued, and I got really anxious. Did the neuro miss something? I started examining my muscles, trying to do strength tests, trying to assess my own reflexes. All sorts of crazy things.

I then asked to see the neurologist again, just to ensure that he hadn't missed anything the first time. He did an even more thorough EMG three weeks ago (at least I think it was more thorough). Before I went in I was sure he would tell me that there was a problem.

Well, surprise surprise he said the tests were completely normal and that there was no sign whatsoever of motor nerve damage. He did spot one fasciculation in my calf, and said it was extremely typical of benign fasciculation syndrome. I had spent months worrying over nothing!

I still have twitches. I get them almost everywhere - very common in both calves and both hands, and less frequently in my arms and neck and stomach and ear and lips. Some days I get lots, other days hardly any. In retrospect I always notice that the days I don't seem to have them are days when I am quite busy. Perhaps I was too busy to spend time thinking about them?

Of course, I shouldn't be on this site, but curiosity brought me here again! I have been checking in occasionally since December, but it was the similarities between my situation and bobajojo's that prompted me to post.

I even get a lot of neck cracking as well like bobajojo, and have had a brain and cervical spine MRI which have also been clear.

So hang on in there. I am pretty much the same age as you, and also a young dad. I consider the last 6 months or so to have been lost months spent in excessive anxiety about these twitches. If the doctor gives you the all clear on the EMG believe him and just accept that it is something benign that is quite common and that won't kill you. Yes, it can be annoying and can cause worry, but really the thing that hurts most about BFS isn't the twitching but it is the worry it can cause.

Best of luck.

 

[Alyoop]

Marvelli, thank you for your post. What you went through is common, and letting people with similar problems read your post and hear the outcome, is extremely beneficial and healing to all the worried twitchers.

Aly

 

[trfogey]

Marvelli, thank you for your post. What you went through is common, and letting people with similar problems read your post and hear the outcome, is extremely beneficial and healing to all the worried twitchers.

Feeling optimistic today, are we? :lol:

 

[Alyoop]

Cheeky!

 

[Bliz]

Hi,
Not sure how old are you.
I am 26, having fasciculations ALL OVER for 4 years. Tongue included. I do not have ALS, my neuro exams remain normal. The specialists think it has to do something with anti-K bodies (check Isaacs syndrome) but its different one. I get them everywhere, hands, arms, back, stomach, legs..like 10 per hour? it depends. Do not let it ruin your life..like I did unfortunately

 

[bobajojo]

Thank you everyone. I have not had an EMG yet. Had a neuro exam last week and the only findings were that I had brisk reflexes in both my legs. It could be that I wanted to pass the darn test so badly that I subconciously kicked as soon as he hit my knee. Anyway, I've since read that brisk reflexes are also a sign of ALS so that has caused even more anxiety. This twitching thing is crazy. My legs just will not stop. It's like they're bubbling all day long. I get them all over as well but the legs are the most constant. I've also been through periods of cramping too. When I lay down, my back and abdomen start to really jump. No weakness though which is good... I think. It's so confusing to read all the posts on this site. So many people will tell you not to worry if widespread twitching is the only sign, but then, so many others will say that widespread twitching was their first sign of ALS.

I'm going to see a therapist today to help with the anxiety. Uuuughh. I want my life back.

 

[Alyoop]

Brisk reflexes are also a sign of anxiety and are highly subjective. Drs frequently disagree about the degree of briskness a person has. I would only worry if they are pathological, showing clonus.

So relax about the brisk reflexes