For the past three months I have had twitching in my temporalis muscle. It's a rapid twitch, like an erratic heartbeat. One time it went for more than 24 hours non-stop. Since then I have also felt like I am slurring my words, like I can't pronounce things properly or clearly. For the past few days I have also been getting some twitches around my mouth, on the same side as the head twitches ... I am so scared of bulbar-onset ALS that I can't eat. I am barely functioning. Has anyone else had symptoms like this and it be nothing? Before you remind me how rare it is in young people, I am not young. I am 54, the exact average ago of onset.
ALS fear
- Thread starter mel1968
- Start date
Gooze17
Active Member
- Joined
- Nov 23, 2020
- Messages
- 338
- Reaction score
- 150
I convinced myself I had it a few years ago. Had what you describe. My left calf would twitch nonstop. I’d have tingling in my face like a piece of hair was there, I couldn’t get words out correctly and my fingers started noticeably losing dexterity. Went through neuro and a ton of tests and all came back normal. Between that and starting vitamin B supplements my symptoms gradually went away. A lot of it in my case was anxiety I’m sure
Gooze17
Active Member
- Joined
- Nov 23, 2020
- Messages
- 338
- Reaction score
- 150
It consumes you. Most of my health anxiety has. I’ve had so many diseases and illnesses. It’s hard to work through because as far as your mind is concerned you have whatever disease it says you have. And it will give you symptoms to enforce those thoughts
Gooze17
Active Member
- Joined
- Nov 23, 2020
- Messages
- 338
- Reaction score
- 150
Just have to find ways to cope. Therapy helps, book by Claire weeks helps “hope and help for your nerves” was very useful. Biggest thing I was able to do (it’s incredibly hard) was to let myself experience those fears and feelings instead of fighting them
I have a Claire Weekes book someone or other. The trouble is I can't accept it's HA, so reading the book feels like denial, if that makes sense, or like I am tempting fate. But with ALS it's not like catching it early gives you a chance at a better outcome. There is only one outcome. So in that sense, it's pointless to even worry about it. I either have it or I don't
Gooze17
Active Member
- Joined
- Nov 23, 2020
- Messages
- 338
- Reaction score
- 150
I mean by all means get tests. If you have it they can help in some small way and if you don’t it fixes the anxiety over it. Somewhat. Because then you go down the rabbit hole wondering if they missed something. It never ends
Yep, I know I would just second guess the doctor, the tests, whether it was done "too early" or "in the wrong place". I don't want to go down that route if I can help it. Only time is going to help, I reckon. One way or the other. Did you go see a neuro?
Gooze17
Active Member
- Joined
- Nov 23, 2020
- Messages
- 338
- Reaction score
- 150
I did but my symptoms were actually visible in a doctors office. I lost a lot of hand dexterity and it was noticeable
Did you have an EMG?
Gooze17
Active Member
- Joined
- Nov 23, 2020
- Messages
- 338
- Reaction score
- 150
I did. Was normal
sTeaLth
Active Member
- Joined
- Nov 4, 2019
- Messages
- 348
- Reaction score
- 180
Been down this rabbit hole twice. Twitching is not a sign of ALS. It is something that comes far after you already have been assured you have the disease. What you have is what all humans have and sadly what anxiety sufferers see a lot… twitching from stress. You’re fine. Repeat it to yourself until you believe it. It will pass. The fear will eventually pass.
I was reassured by this at first, by the sticky on the ALS forum etc, then I started reading beyond this: accounts by PALS on the forum as well as studies indicating this isn't necessarily the case. Don't get me wrong, I want more than anything to believe it, I just can't now. I can't unread that stuff. I hate the internet
sTeaLth
Active Member
- Joined
- Nov 4, 2019
- Messages
- 348
- Reaction score
- 180
Yea. Looking for the worst possible case scenario is going to find you the worst case scenario. The problem is that the internet puts hyper focus on the million to one chance stuff that happens… not what happens to everyone else.
Think of it this way, put one million people in a room for a raffle and you could win a dream house if your number is drawn. You’d have basically no hope of winning, right? That’s your chances of getting ALS. It’s almost impossible, it’s so slim. Stress and anxiety induced symptoms though? Absolutely and insanely common. About as common as left handed people. Not everywhere but you can find them pretty easily.
I used to twitch and shake in fear until I fell asleep. For hours. I never thought I’d ever be okay again. Eventually, I started believing it was my anxiety and it went away. I still twitch sometimes but it no longer makes me fear. Stop looking for answers on web searches. They only highlight the thing people are interested in reading. The crazy off shoot things… not the standard normal everyday people issues like what you have. You are simply finding what you are looking for. Not what’s real. Trust me. Been there.
Think of it this way, put one million people in a room for a raffle and you could win a dream house if your number is drawn. You’d have basically no hope of winning, right? That’s your chances of getting ALS. It’s almost impossible, it’s so slim. Stress and anxiety induced symptoms though? Absolutely and insanely common. About as common as left handed people. Not everywhere but you can find them pretty easily.
I used to twitch and shake in fear until I fell asleep. For hours. I never thought I’d ever be okay again. Eventually, I started believing it was my anxiety and it went away. I still twitch sometimes but it no longer makes me fear. Stop looking for answers on web searches. They only highlight the thing people are interested in reading. The crazy off shoot things… not the standard normal everyday people issues like what you have. You are simply finding what you are looking for. Not what’s real. Trust me. Been there.
sTeaLth
Active Member
- Joined
- Nov 4, 2019
- Messages
- 348
- Reaction score
- 180
I know. It will pass though. It’s hard now but have hope!
Last night in the shower I noticed my balance was off when shaving my legs. I then looked at my right calf, on my dominant leg, which has always been significantly larger than the left. And it's smaller! This sent me into a new panic. I am working out with weights, how could it have shrunk?! It's not my imagination, I measured it. For as long as I can remember I have been self-conscious about how much smaller the left was than the right. For about a year or more I have also been tripping on that side when walking on pavements, but I thought that was because of my scoliosis/frozen toe. I am really scared now
sTeaLth
Active Member
- Joined
- Nov 4, 2019
- Messages
- 348
- Reaction score
- 180
Ya. I’ve had all that too. Once again though, atrophy follows having the disease for a long time and already losing muscle ability. Like, actually losing the ability. Not just thinking your off balance or weak but actually being unable to walk, or climb stairs, or hold a coffee mug. If you can do those things… you don’t have it. I promise you that your mind can convince you that you have anything if you let it. Stop comparing your body. If you’re concerned then go ask a doctor and they will tell you what I’m saying. There is no question when ALS is involved. It’s obvious. To you and everyone around you. You. Are. Fine.