Worried about my 24/7 bilateral calf twitching

[Vattonito]

Hello All,

I guess I will start at the top; first off, I do have serious health anxiety that I’m in treatment for.

About a month ago I was awoken in the night with a really bad calf cramp in my right calf. At the time, I didn’t think anything if it and went back to sleep. I noticed for a week or so after that my right calf was just overall sore. I got worried about a possible blood clot and went to the ER. They did an ultrasound a bunch of labs and said it was fine and said it was probably Achilles tendinitis and sent me on my way. About another 2 weeks later I went and got some tattoo work done on my left calf, and noticed my calf twitching right after. I figured it was just from the tattoo and ignored it. Days later I still noticed the twitching and then noticed it in my right calf as well. I went to the neuro who scheduled an EMG for a few weeks out. Since then, my calves have been twitching 24/7 with pops all over my quads, glutes, knees, and feet with my legs feeling really heavy and weak. This worried me and sent me back to the ER. They said it seems like a classic case of sciatica and refered me to a chiro. This morning I woke up and my right bicep was twitching and I had some pain in my right shoulder blade that was radiating down my arm. I’m getting terrified of ALS, and having to wait a few weeks for the EMG has been torture. I haven’t been able to sleep and I’m noticing twitching all over but the calves have been literally non stop for almost 2 weeks now. I’m only 31 and have a wife, a child, and another on the way. I’m just hoping someone might have some information while I wait for this EMG.

[Roguequeso1989]

Yes. I had an emg/NCS and it came back normal. So, I have no idea what's wrong. I've started taking neurontin and lexapro. I still find myself in pain in my hands at night or if I'm holding things for a while (like the steering wheel).  My legs twitch so much.... it's so crazy. I know it's not any sort of imbalance. I drink plenty of fluid, I take vitamins, and my bloodwork looks good. So the only thing i can think is that maybe this is the after effects of diamox. I stopped taking it about 2 or 3 weeks ago after being on it for a year. I think it has caused some sort of permanent or semipermanent damage to my nerves that the ncs isn't picking up on. That's my theory. If I get even the slightest exertion and/or hot, my legs and feet and hands violently twitch. It's very bizarre.

[rjb1682]

That is crazy. I've been twitching bodywide for 2 months now. Had every test except EMG which I assume will be next. Was dx with myelitis but that doesn't cause twitching. So annoying.

[Vattonito]

My twitching seemed to get a little better, but now is back in force and hotspots have move. Now my shoulder blade and shoulder are twitching and my muscles just feel so fatigued. Even after a clean EMG, this is just an exhausting syndrome to deal with.

[rjb1682]

My arches on my feet are 24/7. Still no EMG but going to ask for one soon.

[rjb1682]

Getting EMG in a few weeks. Are the needles painful?

[Roguequeso1989]

It's not unbearable. It's just a little uncomfortable. The needles are very thin so its not as painful as a shot but it's similar to getting a shot. You'll be fine. Just don't watch when the doctor is doing it and you'll not feel so bad. It doesnt last too long. I anticipated it being much worse than it was because I made the mistake of looking at youtube. And then reading the comments.... people made it out like it was the most painful thing ever. That's not true. You'll be okay.

[Vattonito]

To reiterate above, I was anticipating so much worse and it really was nothing at all. The NCV was a little funny because the zap you a whole bunch. But the needles are acupuncture needles and very think. Keep me updated with the results.  

[rjb1682]

Will do, thanks

[rjb1682]

Are either of you still twitching? Been 4 months for me and they're non stop body wide still. Still freaking out!

[Roguequeso1989]

I'm dealing with fasciculations all over as well. I don't know what is wrong with you but I can tell you that the likelihood that it's ALS is extremely unlikely. Like .0001 In almost all cases of ALS, the twitching is isolated to an area and preceded by very noticeable weakness in that area. Take some peace in knowing it probably isn't ALS.

[Vattonito]

The dr. Doing my emg today mentioned that diet changes can start it. I recently changed diet and lost a bit of weight. But, I was cleared of any MND.

[rjb1682]

You still twitching?

[rjb1682]

Hey Vattonito.  I basically got that same onset of symptoms starting last week.  It started at night in my bicep (visible twitching) and then spread to both feet (bilateral, same spot), butt, calves, thighs ....well everywhere!  I just saw my Neuro and they did a full exam and said if there is no weakness and the twitches are widespread, don't worry too much.  He didn't even want to do further testing.  Saw my primary today and he basically laughed when I said ALS.  Try to Chill (easier said than done, I know), and your EMG results will be fine.

[Vattonito]

Appreciate the response! The thing that’s really worrying me is that both my calves feel very week. I can walk and stuff fine but they just feel like jelly.

[rjb1682]

Sure thing. I believe that ALS attacks one muscle group at a time.  I'm not positive, but I believe it would start with a foot, than move to calf....and so on.  I don't think it would hit both at one time.  Most likely BFS

Regardless, the EMG will give you the answers.  Do you have health anxiety by any chance?  I was diagnosed with Viral Myelitis 6 months ago (It's a 1:5million chance to get) and since then, every tick I get I freak out.  Anyways, best of luck.  Keep me updated.

[Vattonito]

I suffer from healthy anxiety pretty badly. I know that isn’t helping the twitching any. I hope you are doing well after your Dx. Hoping you have some relief.

[rjb1682]

I'm with you on the health anxiety.  That's most likely the root to the problem.  Stay calm, think positive and eat a few Xanax.....Haha.

[Vattonito]

Thankfully I have a follow up with nuro tomorrow. I just hate that my emg is so far out. The wait is unbearable.

[rjb1682]

I hear you. Update me after you meet with the neuro.

[Vattonito]

Just left the neuro. He said his clinical exam was great, my reflexes and strength were good. He mentioned that he feels this is BFS but wants to just do the EMG to rule out anything else. I was able to get my EMG pushed up and will do that in 3 days. He also mentioned that ALS is typically isolated and moves and wouldn’t be over the body this quickly. So, it was reassuring to a point, but the wait to the EMG and results will be painful.

[rjb1682]

Well that's good to hear.  I am still freaking out as well, so you're not alone.  

[Vattonito]

Do you have any follow up scheduled?

[rjb1682]

In a month, but that is for the myelitis.  My primary is sending me for a second opinion with a top MS specialist in my area.  I already had a lumbar puncture, 4 MRIs and 30 viles of blood taken.  Not doing any of that again so we shall see.  I'm still twitching though, everywhere.  It just escalated to my head above my left ear and my left eyelid is getting stuck when I try to open it.  Hoping this is all just in my crazy head.  Where are you located?

[Vattonito]

Did you have an EMG done yet? I know the anxiety can be awful. I also have a family history of fibromyalgia and wonder if BFS and Fibro are related. Maybe that is something you can explore as well? Lumbar punctured are awful, I don’t blame you for not wanting to do another one. I’m located in MA. How about you?

Just wish my calves wouldn’t twitch for a day so I can have a little peace of mind while I wait for the emg.

[rjb1682]

My docs don't seem to think Fibro, and no EMG yet. Neuro didnt think it was necessary. Oh man, hopefully not a Pats fan...haha. I'm outside of Buffalo NY

[Vattonito]

Sounds a lot like fibro. I’m a male and my doc told me men don’t get fibro. I almost fell over. I am a pats fan :x can you get to see another neuro and ask for the emg?

[rjb1682]

I probably can but am trying not to worry about it.

[Vattonito]

The peace of mind might help you heal though.

[rjb1682]

I'm getting a 2nd opinion about possibly having MS.  Going to give the muscle twitches another week or so.

[Vattonito]

Going for my EMG tomorrow. A bit worried my calves literally have been twitching non-stop now for two weeks. They are just constantly buzzing and popping. Really hoping it comes back okay.

[rjb1682]

My feet do that, along with the rest of my body. Good luck. Keep me posted

[rjb1682]

How'd it go?

[Vattonito]

Just got out. He said it was all “super normal”. He Checked left leg, right arm, and face. Said he saw no evidence of any MND.

[rjb1682]

Happy for ya. Now pray for me. Is yours in same spots On both

[rjb1682]

On both legs and all over rest of body?

[Vattonito]

Mine are both calves constantly with what I’ve been calling “hit and runs” up and down both legs. I’ll ger some twitching in my right arm and shoulder blade and my left eye lid every so often will twitch once or twice.  Let me know when you get your second opinion.

[Vattonito]

Hey there, wanted to see if you’ve had any updates for your progress.