Twitching over two months

[cap1222]

Good evening everyone. First off, I would like to say thank you to every single person who contributes their feedback to this forum. It seems like a lot of people worry about this disease due to the nature of the illness and it is extremely challenging to get doctors appointments and testing done in a timely fashion without becoming worried sick. That’s exactly the position that I am in now and hoping someone can give me some insight.

I first noticed twitching in February of 2022 in my toes. I can’t recall exactly which toes on which foot but I remember pointing it out to my husband. I was pregnant so I attributed it to some weird pregnancy thing. My toe would move back and forth on its own. It went away and then I noticed it again over the summer months of 2022. Again, didn’t think much of it. The twitching became very noticeable in other parts of my body in November 2022. The fasications were much more consistent in my toes and now I was experiencing twitching on the inner part of my feet, my left calf and my left theigh. The twitching wasn’t consistent but noticed it more at rest but would come about during the day as well. The back of my right shoulder then started to twitch. Then my left bicep would twitch. That is actually how I learned that twitching was a symptom of ALS. I mistakenly googled bicep twitch. My left thumb twitches at times. It twitched all day today and then I notice weird sensations in my hands from time to time that I think is twitching.

I don’t have any remarkable weakness. I have noticed things are harder to do with my left hand and at times I feel like I can’t grab things as hard as I used too. I am right hand dominant so this is definitely not uncommon to feel not as strong in the left but it just feels weird sometimes, it’s kind of hard to explain. I was reading about how the forum describes failure and I don’t think I have failure to do anything I can still do everything I used too, it just might take another minute or so for me to do it. I have checked myself for atrophy and I don’t think I have any but it’s super hard to tell on yourself.

I still have twitching in various parts of my body. My thumb lasts probably for about an hour or two and once it’s started it will stop but if I put my hand in a certain position it will start again. It’s in the top of my thumb where it twitches. My shoulder and biceps twitch (bilaterally) and those will last a few seconds. The calf, theigh and foot twitches do not last long. I will get a twitch in my abdominal muscles and glutes as well. My eyes twitch along with my other parts of my face like my chin and jaw.

I am coming on here to seek an opinion on what you think. I have an EMG scheduled in 3 weeks, I’ve been waiting for two months and every time I get a twitch or drop something I go into a very worried state of mind. My Neuro told me my exam was normal. I just had a baby 8 months ago and it’s very hard to think about something being wrong with me for his sake. I’m an ER nurse for 10 years now and I know I sound irrational. It’s always that “what if it’s me.” I have been reading on here that usually twitching isn’t a first sign but there are many stories where twitching is a first sign and then weakness comes after. I know that all over body twitching doesn’t correlate with ALS but I have read from other sources that it does.

Should I be worried? Thank you so much for your time.

 

[lgelb]

It sounds like some of your reading has been more anecdotal than peer-reviewed. As you know from nursing, it's unwise to mix these.

Twitching can be a manifestation of ALS, but not in and of itself., and seldom as widespread onset in any case. As you have noted, the non-dominant hand not uncommonly feels different from the dominant one. You had a normal neuro exam and I expect your EMG will be equally reassuring as regards ALS or any MND. Since you are only a few months postpartum (congrats on the new arrival!), I trust you have considered Fe/ B vitamin deficiencies as well as the classic fragmented sleep of new moms.

Best,
Laurie

 

[cap1222]

Hi Laurie! Thank you! Yes my neurologist did bloodwork. All normal except folic acid was a bit lower then usual so I started taking a multi vitamin and magnesium supplement at night to help me sleep. It’s funny, my baby sleeps through the night but I do not lol.

You’re probably right, I will feel better once I get the EMG done. You’re absolutely right, going on google, reading stories from others and so forth is completley unhealthy. It’s weird how this kind of becomes a weird obsession. I am going to speak to my doctor about trying out some anxiety meds and see if that helps with the twitching. It’s just such a weird thing that happened. I woke up one day with twitching and it never went away.

I would also suspect that at this point it’s been over two months of twitching, another symptom would have popped up by now. Also unusual for it to be upper and lower extremities at the same time of onset.

I guess I am answering my own questions lol thanks again and god bless!

 

[cap1222]

Okay so I am back with just a few concerns/questions. I had my EMG and the doctor told me it was normal. However, I am still twitching!! I get twitching everywhere. Hand, legs, abdomen buttocks, shoulder blades, eyes, face- literally everywhere. I am going for EEG and MRI of brain next week.

Should I still be concerned for ALS based on what you guys have seen/know? I just want to know if I should push my docs to explore this diagnosis more or if we should be looking for other causes. I just feel like everyone’s like okay it’s nothing but it’s really quite annoying and would like to make sure it’s nothing. It happens everyday and is relentless at times.

 

[ShiftKicker]

Still no indication of ALS- particularly now your emg has come back as normal, which you stated above would reassure you.

Twitching isn't just associated with ALS. No one here is saying it's nothing, only that ALS is not on the table for you. It sounds like you're working with your doctors still to try to track down a possible cause of your twitching, so it would be a decision between you and your doctors whether you wish to keep going in looking for a reason.

 

[affected]

Please, go back to your doctor and discuss this.
No symptoms and a normal EMG. We can't help further. I'm sorry you can't let this go and pursue whatever is going on.
Your doctor is your only helpful port of call now. Don't spend any more hours messing about here scaring yourself like this.

 

[cap1222]

Thank you so much!