What is going on…

[drepet123]

Hello. First and foremost, I am grateful for all of you and for your kindness and support with so many. I can’t even begin to imagine how difficult it is for so many, and yet you still are here supporting. I’ve read the pinned post about general questions, but it still does not fully address my situation I believe.

Here is where I am at:

A few weeks ago, roughly 3, I had a back treatment done called Gua Sha to address some chronic pain I’ve had in my upper neck/upper back. A few days after that, I started to get what I would classify as internal vibrations. I didn’t think much of it until they intensified a bit. I had a scheduled brain/Neck MRI that was already scheduled due to other issues that had been going on prior (Vertigo, dizziness, etc.). MRI was good and no immediate issues found as far as tumors etc. I did have a few discs in my neck that were showing some compact on spinal cord but not enough for immediate concern.

The following week I had a nasty case of what I think was norovirus. It retweaked any nerve issues in my back and was horrible. During that time, and up until now, I have been having random twitches throughout my body. While I have random ones everywhere, they seem to be more prevalent in my legs and feet (literally happening every few seconds in my right leg and every few mins in my left.). They are a lot worse at night or when I am sitting with my legs semi elevated on couch or coffee table. I started doing some leg exercises, lightly, the other day with some strength bands as I realized that I haven’t done any strength training for quite some time. This certainly made it worse and the slightest session of excercise sends them into these twitching things for about a day or two after in the muscles. The muscles then also feel semi cold and sore which I can chaulk up to the working out (even though it was brief).

I’ve had extensive blood work done for nutrients, electrolytes, muscle enzymes in blood/pee, etc. and all have been normal. My weight, in part from the norovirus I’m guessing, has dropped about 8lbs in the last 2 weeks. I’ve been to the doctor a few times and he sees these twitches/tremor and can’t fully explain it. Referred me to a neurologist but it will be quite some time before I can get in.

It is really scaring me and of course, like so many, I’ve only seen the worst case scenarios and it’s consumed my mind. I’ve gone to therapy more during this time, but I can tell it’s effecting my eating, my mood, all of it because I am not worried that it’s the beginning of this illness. My right leg feels “heavy”, which it’s done throughout the years as I feel I tend to favor that one, but no weakness or anything that I’ve noticed. My sleep is being affected and, unfortunately, the medical system where I am is just very slow moving. I keep thinking I should go to the ER or something since it seems like it’s getting worse, but also know the power of the mind. I know that the average person twitches many times a day but doesn’t notice it normally, so of course I am now. The real concern is my legs. Should a little bit of excercise, when I used to do so much more, really throw me into noticeable muscle twitches for days?

Can someone please help me in the sense of does this sound at all like the beginning of ALS? Again the twitching is everywhere, but way more prominent in my legs and feet. My feet have largely stopped and I think that was due to walking for a couple miles for the first time in forever.

Appreciate any guidance and am sorry for even asking.

 

[Nikki J]

You are thinking of going to the ER for TWITCHES? Did I read that correctly? Beyond inappropriate

Everywhere has to wait for specialists. That is how it is these days Especially as people go to them for every little thing Probably your system i just overloaded by the treatment and the norovirus and then you stressed over the twitches which makes you twitch more which makes you stress more….

 

[drepet123]

It is a vicious cycle for sure. The ER comment was more so because of my leg feeling heavy, twitching, the weight loss, and the level of interruption that it is causing to my life with my sleep and my eating. You’re right, I am stressed. Stressed and scared which I know doesn’t help. I just can’t grasp the idea that my mind could make my muscles, only in the one leg primarily, twitch so much. I certainly am not trying to waste anyone’s time. I think the doctor if anything just freaked me out more because he mentioned something neurological as a potential cause. Then of course Google says ALS and how twitching and limb weakness can be a telltale sign. My rationale brain is saying it’s not, and that the workout regardless of how light it was, is probably the culprit. It’s just this mixed with the last few weeks of nerve tingling etc has me scared. I also know as a 31yr old it’s unlikely.

 

[lgelb]

No one said that your mind is causing the twitches, though that can happen. Or your mind might cause a headache but that doesn't mean it's a threat to your health. Or you could have a headache for another reason and still have no real problems.

The point is, twitches, tingling, etc. as you describe are not any kind of harbinger of ALS onset. Not knowing when the dizziness kicked in, perhaps it intersects with the virus at a later stage. Viruses often come with some of that. You certainly want to be in touch with your PCP if any dramatic changes occur.

Also, I doubt you are sleeping well and lack of good sleep can cause a host of problems.

Anxiety often leads to loss of appetite and weight loss. And equally likely is anxiety that you might put on the twitches/tingling, that is really about something else. So you might want to think about what that something else is, and put it to bed.

Surely you've observed that Google is not a doctor. So if you use it as one, you are only amping yourself up, to no point.

 

[drepet123]

Afternoon,

It's been a decent amount of time since my symptoms began/my last post. I've tried to not even resort to posting, as I know how it is to keep reading the same thing, but I'm just at a bit of a loss. I've been experiencing muscle twitching since about 1/5/24. I had a horrible bought of what I believe was norovirus about a week prior. It began in my calves, and was constant. I'm talking nonstop twitching and crawly feelings in my calves, feet, and then larger "thump" twitches in my upper leg. Doctor did some MRI scans, ordered an EMG due to limited neurology openings. Had the EMG 3 days after the twitching started, and a lot of blood work. MRI showed a slightly herniated disc at my L5-S1 area and that it was slightly touching the nerve root. He thought that this could, perhaps, be the culprit for the leg symptoms. Began doing PT to hopefully help correct it and reduce issues. EMG came back clean, and he was glad because my neurology appointment isn't until July so won't be able to have a specialist until then. After beginning PT, the twitching began to reduce in legs but I started to notice it in my upper extremities. Shoulders, forearm, back, neck, and hands. It seemed that the simple PT exercises would cause the twitching to intensify for a few days after, so I reduced as it scared me. Twitching like this after simple exercise is not something that EVER used to happen to me. Started to dissipate there as well and I thought I was more in the clear.

Arms began to "feel" (I know perceived isn't usually anything...) weaker. Like they were still able to do everything, and they are, but that it just took a bit more effort. Then the twitching in the arms fired right back up and was in full intensity. Again with the upper arm, meaty side of hand under pinky, near thumb, forearm, really all over. It seems that simple movements can cause it to happen, and then it persists, and only dies down when laying flat or when I'm moving around and doing things vs. standing still or sitting. This weakness in my right arm just feels like things are moving slightly slower, but I'm not sure that they actually are or if I've just begun to overfocus on what is normally a thoughtless process (picking up things, noticing their weight, etc...).

I'm at a bit of a loss because I'm terrified of it being ALS. Doctors couldn't, at least yet, figure out what was causing things all over the body to occur so of course I stupidly turned to google. It, like so many others, told me that ALS could be a culprit of it and I fell down the rabbit hole. I've largely stayed off forums, other than this and one other post a while back, tried to reduce anxiety, up therapy (heck I am a therapist...) etc. I'm doing all of the things that so many on here suggest to others first, but I'm worried that I'm perhaps not being persistent enough with doctors. Does something like BFS, Anxiety, and all of these other things really cause twitches consistently all over the body? I know anxiety can cause a twitch here or there, usually as a tic, but this is after the slightest using of muscles. Does this, at all, sound like the onset of ALS? Was my EMG too early since it was only a couple days after the beginning of twitching? Waiting until July just feels like so far away for a potential answer. I guess I'm just looking for a little support to help get me through.

 

[KimT]

If the EMG came back clean, I wouldn't worry about ALS. Changes on EMGs happen before symptoms start to appear.

BFS does cause twitches all over the body. Anxiety can as well.

Nothing in your posts make me think of ALS.