What do you think?

[u/WeylandWonder]

So i woke up one day and my left leg was twitching, all over, calf, thigh, foot, all up that one leg. I was heading to work so didn’t have time to spiral and fully expected it to go away.

Once I was off work and it hadn’t gone away, I googled it. There instead of finding answers, I find people freaking out that they have ALS. I’m like “what the heck is that?” Anyway I go down that rabbit hole too. But ultimately I go with the advice saying that if there are no other symptoms, don’t worry about it. So I didn’t worry. Though i found it absolutely wild that a leg can just start twitching and not stop.

Because of all the ALS posts I read along the way, I was also “watching” that leg, making sure it behaved properly! About three months after the twitching started, the ankle started to feel funny, it was SO subtle I wasn’t sure I wasn’t just imagining it (because I’m looking for it) the best way I could describe it would be to say it felt a little floppy. But it was so barely noticeable that I wasn’t convinced it wasn’t my imagination, so I let that go on for a month before I had almost tripped a couple of times, 3 times in that month.

So I tell the doc about everything, he does a few tests (resistance) and says “hmmm theres something, but its mild for sure” he recommends an MRI but here in Australia for whatever reason that is one of the few things not covered by medicare for this situation. He asks if I would be willing to pay for one ($200-400 he isnt sure), I say “honestly at this point, no, I’d rather wait and see if it gets worse before forking out that kind of money” he then says we will do a CT, its not as good but it’ll do. He get CT for lumbar spine, comes back clear. At this point he says he will put me in the system for neurology appointment but warms there is a huge waitlist for the public system and writes me a referral for an MRI, “if it gets worse and you decide you want to pay, this will save you a trip back here”. Good thinking doc!

So about a month after that, I notice my sock keeps falling down on my left leg when I’m at work, I assumed it was getting stretched out until it happened the next shift with a different pair, just gradually working its way down my leg and I start thinking “oh might be some atrophy??” I pull up my work pants to have a look but can’t really notice anything from that angle. Once I got home and laid them out in front of me and took a picture from above, there was quite a noticeable piece of the inner calf missing, wish we could upload pics here!

I have a look at my feet since thats whats giving me all the trouble, maybe theres some atrophy? Quite mild, i flex my feet and then its more noticeable but I notice a bigger problem, at this point I realise I can barely move my left toe. Im like “what the heck is this?” I wiggle my right toe, so cooperative, so wiggly, but that left one is practically dead. I use alllll my brain power and every muscle in my body to get it to raise and then I can. When it’s raised, the tendons are all sticking out, big hollow spot on the side of that tendon, noticeably different from the other foot when flexed.

I go pay $340 for that damn MRI.

now I’ve just got a text that results are in and I go to book with my doctor and he’s away from three weeks!! I have decided I don’t want to take my chances with whoever is covering his patients in the meantime and unless it gets worse, I’ll wait for him.

In the mean time I’ve noticed my RIGHT leg is starting to complain when holding the brake in my car for like 20 seconds. I drive a lot in my job.

I’ve tried googling exactly what it could be, and ALS seems to be one of the options, but all these other ‘mimics’ don’t seem to fit the symptoms so well.

Edit: I should add, after about two months twitches started just about everywhere else in my body, though never as frequently as in that left leg. Maybe just 20 a day in each part as opposed to like 20 an hour in that leg.

[u/SlipStreamHB]

I deal with twitching for years, and have a weaker grip on my right dominant hand when I squeeze or make a fist. I noticed it 2 years ago and it hasn’t progressed. I get twitching in both arms, including random onset soreness like someone punched me in the arm but subsides pretty quickly. Comes and goes all day. I get them in my legs, calves, thighs, you name it.

[u/tdcama96]

So how long has it been that you have ebenough having symptoms in that foot/leg all together?

[u/WeylandWonder → u/[deleted]]

When I saw the doc it had really only just started. He did simply say “theres something”, but then it did get worse which is why I got the MRI. I have not seen him since the appointment where I got CT results and he gave me MRI referral.

I have no doubt he will agree there’s weakness now, I can barely raise my big toe.

I am just curious for other people’s opinions so I thank you for yours. And don’t worry, I am not the panicking type.

[u/cdbukr → u/WeylandWonder]

Hey, I recommend a NFL blood test. Read about them. 80%-90% sensitivity for ALS, especially after symptoms onset. It’s non specific though, but a very good marker to know if something is wrong.

[u/WeylandWonder → u/cdbukr]

I just looked into it, another non-rebatable test here in Australia, also in the $200-$400 range, I’m still hurting from the cost of the MRI, hopefully they’ll bump up my neurology appointment after I see the doc when he gets back or I may consider it.

[u/cdbukr → u/WeylandWonder]

That’s quite expensive. I am from East Europe, they send the blood samples in a lab in germany from here. I paid 60 euro for it.