Almost sane, I just need a tiny push more...

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BigSpookies

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Sep 16, 2022
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Learn about ALS
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Country
CA
State
QC
City
Montreal
Hi everyone,

I don't want to waste anyone's time and I swear I've taken the steps to be as sane as possible before posting here because I really don't want to just be annoying, but I think I've come as far into this madness as I could without help. I'll try to keep it short as my story can be somewhat summarized into 2 parts, the fear, and the actual maybe-symptoms.

Part 1, The fear: about 2 months ago my eye started twitching, I didn't look it up, I didn't think about it more than that, I figured I was fine because my eye sometimes twitched when I was stressed, except this time it didn't go away. Continued to ignore it until about 3 weeks ago when my fingers started twitching (I wasn't getting much sleep at all for weeks at this point because of work) and then I started getting worried. It started in my pinky and worked it's way to my index over a day or two. That's when I googled it, and this is why this part is called "the fear." I've read the sticky and I've been to the bottom of this and back, and I see how many people have lost their minds with terror about this horrible conditions, because 90% of sources contradict each other, and anecdotal "evidence" of random, weird starts are all over the place. Safe to say I absolutely lost my.mind and had a full nervous breakdown for the last 2 1/2 weeks. I started having fasciculations all over my body and I also started having what I felt like left arm weakness and I had a sharp pain in my right calf. I was stuck in a vicious cycle of fear. About 3 days ago I got a grip, realized I was destroying my mind and I started reading better sources (like this board and the stickies) and got to a hold of myself, which made the fasciculations drop DRASTICALLY. This leads me to...

Part 2, The symptoms: I relaxed, I got 9 hours if sleep every day for the last 4 days, and now I have some things left over I hope to rule out here.

My remaining and current symptoms are:
- Fasciculations that only occur a lot in my left eyelid, the ones in my body have reduced to extremely few (8 to 20 total twitches a day spread out through my left lip, thumbs, left fingers, jawline, forearms, left calf and right foot.)
- I had a sharp cramp in my left calf from my outer ankle to the back of my knee 2 days ago and my leg still feels kinda tender there.
- Perceived? Real? Weakness in my left arm. This is the only one that actually still scares me. I feel like I have ants between my knuckles and down my fingers except for my index and thumb, and the outer muscle down the edge of my forearm has felt off and super tired for the last 36 hours or so.

I have a follow up with a neurologist on the 28th, but I'm just trying to regain enough sanity to try and return to semi-normalcy, at least until then. I've seen how kind and patient this board is, and I promise I won't argue with anything you say, I just want to know if it's possible for a forearm muscle to be the first to go, how that would impact thing, and if it would just make things feel a lot harder, or if ALS would shut some functions down day 1?

Thank you for your time and patience,
Another Terrified Fool

OH! Also a little background on myself, I don't work out much at all, so I know the arm isn't related to overworking it.
 
I expect you know what we are going to say that twitching is common and non specific. I will add that eye twitching is even more so. There is a study of genetic carriers that tracks every possible symptom. The data collectors were told not even to record eye twitching because it was felt to be irrelevant

everyone has cramps from time to time

has anyone medical examined your arm? You are describing a lot of sensation which are you know is not the same as clinical weakness.

to sum up none of this sounds like ALS and you are reporting “ symptoms” in 3 areas which even if they were more worrrisome is not how ALS starts. You have an appointment in 12 days. Until then keep busy, stop googling and reading as only the doctor’s finding really matter.
 
Hi Nikki,

I figured as much, I had a quick strength exam about 1 1/2 ago when my left arm felt weird and I had a blood test for inflammation, and x-ray of my neck and a CT scan all clean. Would any of those have shown anything if there was a reason to worry?

Also I've stopped reading and googling completely at this point, the initial spiral is over and I'm seriously doing everything I can to try to ignore it all until then. I do fairly well about it but I'm trying to stop the random anxiety/panic attacks...

Thank you for taking the time to answer, though, I'm just looking to confirm I'm nuts so I can chill a little.
 
You've already had it confirmed that none of it sounds like ALS. Full stop. Log off this site and go live your life until your appointment (and beyond), and forget about ALS.

Take good care
 
Hi Everyone,

Alright, this is it; last time writing here and potentially wasting y'all's time with this. I have some news.

Basically all my symptoms I've previously mentioned are gone, and so is 90% of the fear. This is why this is my last inquiry. If I'm told to look more into it, I'll look more into it, but if you guys tell me it's not ALS, then I'm done here and moving on with my life.

Right now here is the state of things:
"Symptoms":
I have severe stiffness and what genuinely feels like minor weakness in my left forearm, and my left index, ring, and pinky fingers all have a tremor if I flex them at about 80%. (Not really anything at 100% flexed, no tremors at all when resting.)
Doctors have:
Passed me a CT scan of my head - Clean
Blood tests for thyroid, diet, and inflammation markers - Clean
X-Ray of my neck - Clean
Surface EMG of my left forearm (and right for comparison) - Clean
EMG with the needle stabs in my left hand (2 spots, one on the outside of my hand under my pinky, and the second jab between index and thumb) - Clean

Having had all that and a neurologist tell me it's "not ALS and very unlikely to be parkingson's" made me sane for a while, but after a few weeks my arm feels weirdly more weak, and I can't tell if it's real or perceived weakness because it does feel incredibly stiff and went from being on the under side of my arm (Ulnar) to the top, hence my index finger now being involved in the tremors.

So my final question is this: If I had weakness in my forearm that was gradual, could it cause tremors in my fingers, and would a few of my arm muscles slowly become weaker, or would one muscle just fail, then another, and then another? Could they have missed an ALS symptom because I wasn't far enough along, or is this BFS (which, after reading extensively on it I'm absolutely suspecting) and am I a moron? Believe me, I'd love to be called a moron, and like I've said at the beginning of the post, if y'all tell me to let it go and this isn't ALS, I absolutely will. I just need final confirmation from someone who knows what they're talking about, and I don't want to have to get a second EMG with the needles in my forearm just to be sane.

Also mark my words I'm going to donate to ALS research after this. Having seen the horror of this thing, there needs to be a cure ASAP...
 
Move on, see a doctor for your health concerns.
All the best moving on with a long healthy life.
 
An arm that was weak because of ALS would not go from 0-60 on an EMG a few weeks later. The damage on EMG would be evident concurrently with the symptoms. And an EMG in ALS is going to show certain findings even in muscles that seem all good.

Intention tremors are not ALS. As for stiffness, you could ask for a PT referral to get evaluated and on a good exercise regimen.

The choice is not BFS vs. ALS. Sometimes limbs get stiff, you start noticing them more, and the cycle goes from there. I would video your sleep and reconsider your mattress/pillow esp. if on the older side, to make sure you are not crushing your own left side. Reconsidering your work position in terms of ergonomics can be helpful as well.

So I think our consensus is going to be, if you can't get rid of your 10% of fear on your own, get counseling, PT, self-care, whatever...don't let hold your life hostage.

Best,
Laurie
 
Thanks to both of you for your replies, and though I find it strange that I have tremors in both hands' fingers when I've never had then before, and random muscle pains when I do 0 exercises, all after having a bout of demented body-wide twitchig for weeks, I think it's overdue for me to forget about ALS.

I'll follow up with my neuro when he gets back to me and keep looking into this to figure out what it is, but if the EMG would've shown something, at least I'm no longer terrified.

Thank you again and take care,
Eric
 
But those things eg tremors are not seen in ALS and twitching means nothing. So it is well overdue that you move along only with your doctors advice, not with wild speculation and internet trawling.
I truly wish you the best.
 
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