Saw Neurologist today and wondering if could be ALS

[MikeR0012]

Thank you all for your time. I’ll explain briefly as possible as I’m worried this could be ALS. About 5 weeks ago I started with vibration feeling deep in left quad muscle. A week letter the quad muscle started twitching. Then a week later my left calf would twitch and then the next week also my left tricep. All of this is felt more often when sitting still or laying down and it’s all on my left side. The neurologist brought up possible ALS along with other possible things like pinched nerve in neck. She noticed my left calf is noticeably smaller than the right calf but I still have good strength. Other test she did showed slightly less feeling on left side for feeling temperature. My EMG is not until July and I have an MRI of cervical spine in May. My muscle twitching is very frequent throughout the day from the moment I open my eyes until I fall asleep, although it’s not non-stop. It’s only on the left side of my body. I know the EMG is the big test but since I have to wait 3 months I wanted to get anyone’s opinion on what I can do in the meantime to help in case it is ALS. Thank you for your help

 

[lgelb]

What to do meanwhile? Live your life. You have no motor impairment; therefore, ALS is at the bottom of the list. I would look at diet, hydration, stress, sleep and exercise to do some tinkering and see what affects the twitching (there is usually something).

Best,
Laurie

 

[MikeR0012]

Thank you for the response. I just wanted to send a quick response as I’ve been taking Vit D, Magnesium, Vit B, Electrolites and potassium daily for over a month as well as good sleep with no improvement. After a lot of activity, as soon as I sit or lay down, my muscle twitching starts all over again. Definitely worse in the quad/hamstring and only on left side. The way the Dr said my left calf is noticeably smaller worries me too. I feel like all other explanations don’t fit my symptoms and the only BFS symptom I have is twitching. I’ve occasionally stumbled with my left foot a few times over the last week or two. I’m hoping the MRI shows something in the neck but it doesn’t sound like with no pain. The Dr didn’t fell like it’s a Vit D deficiency. I just wanted to see if these sound like early symptoms or what else it could possibly be. Thank you

 

[lgelb]

Trust me, there is no way you can have "all other explanations" lined up in your head. There are literally tens of thousands, so Google ALS mimics if you want just a few, but I'm not even sure your situation reaches that severity. Remember, we are all asymmetrical so one calf smaller is not a tolling bell by any means. But yes, "pinched nerves" are pretty common and PT often helps a lot.

As to the idea that "the only BFS symptom you have is twitching," um, that is pretty much the core symptom and you haven't presented anything else that would in itself have us thinking about a fatal disease or even a serious one. Since everything is on one side, even the reduced sensation, I'd be looking (literally, with video) at your positioning in leisure, work, and sleep while awaiting the EMG, which could help alleviate even a pinched nerve that you could be putting undue pressure on.

 

[affected]

I'm not sure that you read this post, which you should read before posting here, but it has a huge list of so many things that people coming here with twitching have ended up being diagnosed with.

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

Twitching without clinical weakness means absolutely nothing.
You are trying to convince yourself and us without but we've done about all we can to help you. Please work with your doctor without trying to diagnose the worst possible scenario and I wish you the best.

 

[MikeR0012]

Thank you for the replies as I appreciate your explanations. I’m just moving along as if it’s BFS unless I hear anything else. The MRI is next week and the EMG in a couple months. It’s definitely concerning but I agree with getting my mind away from it being the worst outcome since it’s also unlikely.

 

[MikeR0012]

Sorry to bother but just have to follow up on a recent post and comment in regards to my scenario. I forgot to mention in my original post that I am 53 years old and male. The other post mentions that Fascics are an early symptom for my demographic and that loss of strength comes after a couple months and my EMG is not until July. I’m 6 weeks into my twitching and it’s mainly the left Quad (75%) but has become more prevalent and visible in my left tricep (25%). Should I be trying to get my EMG moved up if at all possible? It’s worrisome that the twitching is subtle as the BFS groups I’m seen usually have more intense and frequent twitches.

 

[affected]

No if you are talking about what Nikki was saying, you do not have ALS running in your family.
Please, don't trawl around reading all this stuff, without a medical degree you are just worrying and confusing yourself.

Twitching means NOTHING, hold on to that and talk to your doctor after the EMG they scheduled with an understanding of what they are seeing when examining you. If you are still worried, make an appointment and go discuss with your doctor to be sure. Twitching that is subtle or intense means the same thing - nothing.

 

[lgelb]

There are millions of people between BFS, which many people don't bother to have diagnosed, and a fatal disease like ALS. The fact that twitching is subtle or florid or fast or slow or whatever isn't relevant to the key about ALS, that there is some kind of motor impairment that manifests to say, "This is more than twitching." That, you fortunately have no reason to report.

 

[Nikki J]

The twitching first in your demographic is still rare. It is just that it can happen. What it really means is that group of twitchers should have an emg scheduled at some point to rule it out. In a non litigious world the young twitch only shouldn’t even have that.

 

[MikeR0012]

Thank you all for the follow up. I had interpreted that previous post more as ‘weakness, motor impairment, etc is the main symptom’ except for the over 50 crowd and then that symptom can also be ‘early twitching which doesn’t present with weakness’ for a couple months. I’ll stay on course with the July EMG and try to relax. I was doing very well for a few days then I panicked when I read that. I apologize and thank you and will follow up if there’s emg issues.

 

[MikeR0012]

Follow up question on this. Since my MRI just came back clean, the report says the twitching is not due to injury or pinched nerve etc. I was wondering about the 2 month mark since it’s possible that is when I will start getting weakness and motor issues since I’m male and over 50 and that’s a remote possibility for my demographics. Is there anything I can do at home to test weakness or can only a Neuro test clinical weakness. I’m about 6 weeks from when symptoms started. My twitching is at its peak when I sit in a chair and the hamstring has the chair pushing on it. My Neuro said usually she checks for als twitching by activating a muscle and seeing if it twitches afterward. She tried this in my tricep by hitting it repeatedly but it never reacted at my appointment but this method seems to make my hamstring react and that’s where all the twitching started. Wondering if I can test my legs at home for weakness or possible signs. Thank you for your time I appreciate it

 

[Nikki J]

Do not self test. Don’t. It is non helpful to you and contributes to anxiety. Overuse injuries are a common outcome leading people to believe they have weakness when it is self induced. There have been cases of actual significant injuries including fractures.

most twitching has no findable cause. You are wasting your life worrying. I don’t believe that trying to induce twitching is helpful diagnostically. One doctor tried it on me and got nothing

 

[affected]

Please stop torturing yourself this way.
We can't help any further, you don't have ALS symptoms, you just have twitching and it is really sad that you are letting this take you so far down.
As Nikki says - do not test yourself, you are not a doctor and have no idea what you are doing or what harm you can cause.

PALS don't self test, they suddenly can't do things!