Fasciculation for 38 months

[yoa1983]

Hello everyone, I am 37 years old and I have had fasciculations all over my body for 38 months now, mainly on the calves and arches of the feet. I'm afraid this is a warning symptom of ALS. I saw a neuro and just had a clinical test in 2018. I never had an emg. I have read the sticker several times. Is it possible to have twitchs for more than 3 years with ALS? I've been scared and have been a hypochondriac. Thx

 

[lgelb]

No, I have never heard of anything close to >3 years with twitching progressing to ALS. It is a faster onset, with features beyond twitches. You do not have ALS.

You may have a syndrome called BFS (benign fasciculation syndrome) that is common and not dangerous. Sometimes a few drops of magnesium lotion on the twitching spots can help, as can paying more heed to balancing your electrolytes in your diet, drinking enough liquid, getting good sleep and exercise, and getting counseling if you need it to address your fears. People with BFS can feel better by keeping a diary of food, exercise, sleep, and symptoms. It is like being a detective to try and see what works best.

If you want to learn more about BFS, there are many resources on line, but once you understand it, I would focus on your own situation rather than spending too much time reading about others'. What works best for you is what's important, and there's only one way to see what that is -- to keep living and do your best.

 

[yoa1983]

Thank you very much for your answer. I am here because I have heard that it takes sometimes 5 years to say that the fasciculations are not a sign of als. my twitches improve and then they keep coming back except in my calves. I don't think I have any weakness just my right knee which cracks and feels weak but I don't know how to describe it ...

 

[lgelb]

I have no idea where you got five years. It's not true.

See your primary care doc or an orthopedic surgeon if you have a new weakness in your knee, but it won't be ALS.

 

[yoa1983]

thank you for your advice, it's hard not to think of the worst when you have had contractions for more than 3 years without knowing the reason. I started having contractions all over my body reading the symptoms on several sites. some say this is an early sign of the disease which is why i have been so sad since 3. i walk, run and walk on toes and heels so not sure if i have any real weakness or if I have a real weakness. thanks again

 

[lgelb]

The fact that it's been going on for 3 years should be reassuring, not troubling. Twitching alone for 3 years is not at all a sign of ALS. I would stop reading about it, as it simply doesn't apply to you, and get counseling for your health anxiety if you can't let it go. You deserve to do more with your life than worry about something that isn't real.

 

[yoa1983]

hello, sorry to come back here. I had less anxiety about the als and today I keep having twitchs everywhere. this has been going on for over 3 years and i'm worried because it won't go away and i haven't had emg because no weakness.

frankly, are there any stories of als that start with twitching 3 years ago? I'm too scared and it's hard to live with. sorry

 

[Bestfriends14]

Your question has been asked and answered. I'm sorry to tell you that an ALS forum is not the place for a hypochondriac. This forum is for those who have ALS or have been told that they may possibly have it. All other folks can ask questions if they are worried, however, once questions are answered, it's time to move on. The folks here are not equipped to handhold health anxiety. Please go speak to a counselor as this is not the place to get counseling.

Best of luck to you.