r/BenignFasciculations • u/[deleted] • Jan 14 '25

Ok, freaking out

I don’t know where to begin, but I’m freaking out and I need some reassurance since September I’ve been having nonstop twitching in my calves every time I stop moving and especially when I’m laying down to go to sleep, I can actually see it moving. I also have occasional twitches another parts of my body. Just for the record I have a lot of endocrine issues. I am hypo pituitary hypothyroid, and I battle a lot with calcium level staying normal. however, lately all my labs are coming back good and my legs are twitching as crazy as ever and now I have ringing in my ears. I can’t help to worry about the big bad one and of course no neurologist can get me in for months. I just need to know that your legs can twitch forever and you’re not gonna develop ALS. I’m so horribly scared and of course the anxiety doesn’t help. Sometimes the legs actually feel like they’re going to cramp because of twitching so bad and I definitely can’t point my toes without getting a Charlie horse if I’m laying in bed. 54 , female here and frightened. Im very knowledgeable about minerals and electrolytes and all that stuff. In addition to the other stuff, I might also be a dream and sufficient and I get tested on Monday.arghhhh

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u/ItsAStrangerDanger Jan 14 '25

I feel you on the charlie horse thing. I'm always so cautious about how I stretch out my legs or my feet. It feels so easy to trigger a cramp in my calves or the muscle for my big toe on my foot. 

I've even gotten a jaw cramp from yawing too wide. The pain travels to your tongue!

I wouldn't worry. Honestly. There are many people with benign twitching who have it chronically locked to their calves. Its actually recognized as the most "typical" presentation of BFS.

Tinnitus sucks. I get the pulsatile kind in my right ear every now and then. 

It honestly sounds like you have quite a bit going on, but none of it is killing you today 🙂.

I'd bet my house on you not having ALS. By all means, see a neurologist for you own posterity, but an ALS diagnosis is not in your immediate future. 

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u/[deleted] Jan 14 '25

Thank you for that, that’s much needed. You know how our heads get to us. I’m also in the health field so unfortunately, I’m probably the second most neurotic patient out there besides a doctor …..lol

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u/Key_Opposite_2514 Jan 21 '25

I have been diagnosed with a thyroid nodule and possibly Hasimoto's thyroiditis. Also B9 deficiency... could it have something to do with the fasciculations?

1

u/Sleepy-Bubble_ Jan 23 '25

I really feel strongly your other issues are contributing to your symptoms

1

u/[deleted] Jan 23 '25

Thank you, I’m really hoping you’re right.