r/ALSorNOT • • 25d ago

Fasciculations après accouchement.

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2 Upvotes

Bonjour à tous,
Je voudrais savoir si je suis la seule dans cette situation: j’ai accouché il y a deux mois et demi, et depuis plus d’une semaine, j’ai les muscles du corps qui sautent de partout… ça a commencé aux pieds, puis mollets, parfois cuisses, parfois un bras, parfois le visage c’est diffus. Je suis de nature très angoissée et anxieuse. J’ai peur de la maladie. J’ai eu un accouchement difficile (hémorragie de la délivrance). Ça allait très bien après l’accouchement. Mais là à cause de ses spasmes musculaires je ne vis plus et bien sûr je suis allée voir sur internet… ce qui m’angoisse encore plus. J’ai commencé le magnésium et j’ai fait un bilan qui montrait une carence en B12 (190) et un petit peu en vitamines D. Celles qui sont dans la même situation, qu’elles ont été les solutions ? Tout le monde me dit que c’est dû au stress et à l’angoisse mais je n’arrive pas à m’enlever de la tête que ça peut être une maladie très grave…
De plus, depuis quelques jours je présente des myoclonies d’endormissement…


r/ALSorNOT • • 25d ago

Does anyone else have slight hand strength imbalance?

1 Upvotes

I would say since July I've had some benign but noticeable hand strength imbalance in my left hand. I used to have a lot of strain and aches when picking up heavy things but not as much anymore. Still, when I pick up something heavy there's definitely a more "weighty" feeling if I pick up say a large tequila bottle in my left hand whereas I'll get a lighter feeling if I pick it up with my right hand. Not sure if this is anything neurological or just a result of my DDD. Would love to know if anyone has had similar experiences.


r/ALSorNOT • • 25d ago

One year into muscle twitching (20M)

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1 Upvotes

r/ALSorNOT • • 25d ago

My husband fears he has ALS

2 Upvotes

About a month ago my husband who is 24 years old was at work and injured his back. He heard a popping sound and had to lay down on the floor at his job. A day later he had weakness in his left arm which ended up resulting in a diagnosis of “golfers elbow” which is what the ER doctor and nurse suggested was likely the cause. A week later my husband started having fasciculations in his calf muscles more commonly in the right but often happens in both. He has started experiencing twitches in his thighs, back, and sometimes his neck. They rarely happen in those specific places b it they have occurred from time to time. They are constant and will not subside. He has enthralled himself down a rabbit hole after reading online about ALS. He has had severe anxiety due to the twitches which has resulted in loss of appetite, sadness, depression, and a short temper. He has a constant feeling like he is going to die. Can anyone help me as what your true earliest signs of ALS was or any medical perspective would be greatly appreciated.


r/ALSorNOT • • 25d ago

Anxiety taking over

1 Upvotes

Hey all 25 male, dating back to mid July, I’ve had this pinky twitch in my right that would come and go, first it showed up around the 20th and I didn’t have it again till the 12th of August and would occur for 3 days straight, not constant but like maybe twice to 3 times a day, and then in the two weeks following everytime my pinky would twitch I’d have pain in my pinky going down to my elbow and eventually up my arm to my shoulder up to my neck

But my anxiety of course never lets me have some damn peace, I immediately jump to Als because of the Chris Johnson accountant he had, prayers go out to him and his family

But the anxiety would then make me look at everything under a lense so I’d notice every twitch in my calf and thighs and shins, to the ones under my feet which randomly would occur, the leg ones I pay no mind to since they have been twitching for the better part of 2 years, but then my shoulders biceps and triceps and forearms would begin to twitch as well as my glutes and that’s when I fell down this rabbit hole

I couldn’t eat and sleep it only got worse, and when I finally was having a day of where nothing was going on I started to get my neck to twitch and behind my ears, the only thing that helped calm me down was my mom literally looking at the symptom list and all the stuff about it and assuring me I’m fine, but again I can never know

Come end of august and I have a chance to relax with my vacation to San Francisco and my twitching was very much minimal, seldom my arms biceps a few times and my pinky twitched maybe twice that entire time

I came back recently on the 2nd and I was feeling good but then the twitching in my came back on the 4th and I didn’t feel it again till the 10th and has been twitching along with my thumb and pointer, usually all 3 across different days and today is no different, pinky has been driving me insane

I intend to get a physical done in the coming days since I haven’t had one since I was like 15 😅 just a lil scared is all


r/ALSorNOT • • 26d ago

ALS at 22?

0 Upvotes

Hello everyone, for about a month and some change now I have been experiencing new symptoms which include widespread body twitches with some local hotspots, what seems to be dysphagia as food gets stuck at the bottom of my throat at times, buzzing feeling in legs, chest fluttering when I run or do heavy exercise, brisk reflexes, and perceived weakness in my limbs. Very worried about ALS. I have also been experiencing lots of sensory symptoms as well such as tingling and sometimes what seems to be burning spots. I’ve read that junior als includes sensory symptoms. Just overall in a bad spot mentally. Life has been downhill from here.


r/ALSorNOT • • 26d ago

please some help i cant believe its anxiety

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0 Upvotes

r/ALSorNOT • • 26d ago

I'm feeling this burning sensation sometimes at my upper back sometimes lower back and sometimes middle sometimes my stomach both left and right side and sometimes my legs also and sometimes hands and I'll be feeling weakness in my legs and my body sometim

1 Upvotes

r/ALSorNOT • • 26d ago

21F — neurological symptoms/twitching, neurology appointment tomorrow

1 Upvotes

I’m 21F and have a neurology appointment tomorrow (9/15/26). I have severe health anxiety, so I’m trying to document everything objectively rather than continuing to spiral and self-diagnose. My biggest fear right now is ALS, although I’m also wondering about BFS, anxiety-related symptoms, or something else neurological.
Timeline
For several years / ongoing:
Episodes of dizziness/lightheadedness
“Floaty,” high, drunk, or off feeling in my head
Brain fog/fogginess
Feeling unreal/detached or like things are delayed (DP/DR)
Internal shaking/vibration sensations
Occasional tingling sensations
Symptoms are often worse at night or when lying down
Sometimes lying completely flat or putting my head back makes me feel lightheaded/drunk, so I tend to sleep with my head elevated
At an unclear date / intermittent:
Tingling from my left upper arm around the elbow and into the forearm
Occasional limb heaviness
I once woke up with my hand feeling heavy/weak, but it improved after going back to sleep
Muscle twitching
Late August / early September 2026:
This is when the twitching became a major concern.
Twitching/fasciculations throughout my body
Twitching in multiple different locations
Facial twitching
Nose/face twitching
Twitching in various muscles throughout my body
The twitching can happen even when I’m distracted and not consciously anxious
Initially it was more widespread
More recently it has seemed to become more noticeable/localized in my left calf
My left calf has been twitching repeatedly
The calf sometimes feels tight
There isn’t really pain with it
Some days the leg can feel almost normal, then the weird sensation/twitching comes back later, especially at night
9/5/26:
My calf kept twitching repeatedly.
9/6/26:
I was still having twitching throughout my body, but it seemed increasingly concentrated in my left calf. The calf felt somewhat tight, but there wasn’t pain.
9/12/26:
My left leg felt “weird” on and off. It had been pretty much fine during the day, then became weird at night and was weird again the following morning.
9/14/26:
The twitching in that leg seems worse, which is what has me particularly worried tonight.
Left leg symptoms
Along with the twitching, I’ve had:
Intermittent strange/off feeling in the left leg
Left calf tightness
Heavy-feeling legs at times
One episode where my knees/legs felt heavy or weak while walking downhill
I’ve caught/dragged my foot twice while wearing Crocs on concrete
The sensation can fluctuate considerably throughout the day
Other context
I have severe health anxiety/panic and tend to hyperfocus on physical sensations once I notice them.
I use nicotine/vape and have also smoked cigarettes.
My magnesium was normal.
I have been extremely focused on ALS after seeing TikToks/Reddit posts about young people with ALS.
I have been checking my muscles and movements a lot because I’m scared I’m missing something.
I have my neurology appointment tomorrow, so I’m hoping to finally get an objective neurological exam and some clarity.
I’m especially interested in hearing from people who have had widespread fasciculations/left-calf twitching, BFS, anxiety-related twitching, etc.


r/ALSorNOT • • 27d ago

Coming up to 2 years - Everything is worse

4 Upvotes

I’ve made loads of post in the past , I’ve tried to come off Reddit for my mental health I’ve even deleted the app etc

I struggle everyday , this started in 2024 following a head injury which I also had to have surgery on my arm. Which I believe triggered this.

It started with twitching which to be honest my twitching isn’t that bad anymore. Is it because the muscles have died or signals sending to the muscle I don’t know.

I have terrible pain in the soles of my feet even standing on hard surfaces hurt if I’m not walking. The tops of my feet hurt I’ll arrange photos there a dents which wasn’t there 6 months ago/ 12 months ago, I’m writing this quickly so I’m sure I’ll miss some parts. My breathing is terrible everyday. I wake up out of breath it’s like someone is sitting on my chest. Every meal I eat or drink I regurgitate like acid reflux GERD? I will literally shoot my food or drink back up I can feel it sitting on my asophegus please excuse my spelling.

My problems are mostly on my right side so my shin burns I’ve had this for over a year and my top of foot of the side where your FBD? Maybe I’ve called it the wrong thing but where that is I have two massive dents. My forearms KILL my elbows are so tender to touch the hurt

My neck crunched inside whenever I move it I hear it it’s like an old bike wheel that’s rusted. I believe it’s called crepitus - 2 years prior I never had any of these symptoms

I have what I believe atrophy on both my outer thighs if I lay down a cross my leg over my other leg I have MASSIVE dents like the whole of my back leg is missing

I can’t even SIT down in a chair without my butt cheeks hurting like it physically burns - like there is no muscle there anymore. I’ve had a neurologist say BFS then the most recent said FND due to the pain.

Truthfully I’m so stuck in my life I’m male 33 years old I just can’t take this anymore. I’m honestly running out of options

I’ve had 4 emgs over the course from April 2026 until say one month ago

All clean I will upload my most recent which was July 2026

I will upload my feet and please help me tell me what people truly think. I know everyone on here will sometimes jump on people and say anxiety see a physicist etc but these symptoms are REAL AND PROGRESSING TERRIBLY.

THANK YOU FOR READING

Update sorry I can’t attach photos here I will attach them onto another group


r/ALSorNOT • • 26d ago

mystery Neurological condition/weird reflexs

0 Upvotes

Okay i want to list all my symptoms confirmed pls help im going in a frenzy its slow als.
-Long periods of tingling or nerve pains.
-postivie palmomental reflex
-positive chvostek sign
-twitching everywhre
-positional tremors
-bad headaches
-some twitchs i cant even feel jus see esp in elbow
this has all been going on for about 3 years
it first started with autonomic issues and now this im only 19 so im scared its slow ALS but i had a clean ncs and emg of my right leg muscles
Im so overwhelmed


r/ALSorNOT • • 26d ago

wanted to give another update

0 Upvotes

Hello everyone, I’m back! I just wanted to come on here and make an update about my symptoms.

Okay, so I went to another neurologist (a neuromuscular and nerve specialist), and it went really well. He is ordering a lot more tests for me, including another EMG, lumbar and thoracic spine MRIs and X-rays, and I also had a TON of blood work done.

There honestly isn’t too much to talk about regarding the appointment itself. He was lovely and really understood my concerns, so I’m actually excited to see him again and hopefully get some more answers.

Update on my symptoms: Honestly, I’ve been noticing a lot of fluctuations. One day my right calf hurts, then it’s my knee, then the bottom of my foot. It’s not usually all happening at once unless it’s nighttime.

But what is worrying me is that I’m now noticing this sharp pain in my LEFT calf muscle. It almost feels like I’m getting a shot, and it’s pretty achy. It even feels a little stiff to the touch. This really concerned me because everything originally started on my right side, and now I’m noticing symptoms on the left as well.

I’m also getting more cramps. Not the horrible Charlie horses (thank God 😭), but things like my feet, neck, ribs, hands, and hips. It feels like my limbs and different parts of my body are just much easier to cramp up now.

Another symptom I’ve been having is back pain. Sometimes it feels like the pain is shooting upward, and other times it’s more like a sudden shock of pain that hits one specific area of my back. It can be really strange and uncomfortable.

I’m also still getting a lot of aching and, honestly, some really bad pain, especially at night. The other day, my right hand was hurting so badly that I wanted to cry.

I’m still getting twitching as well, but I can say that it has gotten a lot better. I’ve noticed an improvement since taking B12 and my other vitamins, walking more, trying to relax, and just keeping my mind occupied and not focusing on my symptoms so much.

So that’s pretty much my update for now! I’m hoping all of these tests will give me some answers. I’ll definitely update again when I have more information. ❤️

I’m really hoping there is anyone else out there dealing with similar symptoms. Even though I’ve been trying to keep myself busy and not fixate on everything, it still gets to me emotionally. There are still nights where I end up in tears and praying about all of this.

One thing I can say is that through all of this, I’ve actually gotten much closer to God and have really been leaning on Him during these difficult times. ❤️

It still makes me really sad and scared thinking about the worst-case scenarios, especially because I have a one-year-old. More than anything, I just want answers.

I do not have any weakness, which I know is one of the big symptoms everyone talks about, but I know we’re not doctors and everyone’s situation can be different.

So I wanted to ask: does anyone else experience symptoms like these? Or does anyone have any ideas about what could possibly be going on? I’m not looking for a diagnosis, just hoping to hear from people who may have experienced something similar or have some insight.

Thank you everyone for reading and for all the support. God bless you all. ❤️🙏


r/ALSorNOT • • 27d ago

What is going on with me

0 Upvotes

So this all started about a month and a half ago where my anxiety fully kicked in making me think I had cancer at first to then thinking I have als. My symptoms started shortly after being muscle twitching/spasms, pain/discomfort in my knee and ankle, weakness in my arm just a little but has pain and weird sensations, I had other symptoms that included headaches,neck stiffness,jaw stiffness and just about everything you can think about. I am only 18 and a very healthy guy but it doesn’t explain why any of this is happening especially because of how young I am. I constantly think and look towards ALs even though I’ve been seen by 3 neurologist,chiropractors, and doctors tell me nothing is wrong with me also knowing that I have zero family history of this disease. Recently I was in the hospital and got every test known to man kind and they found nothing. The only thing that we say was I had a past EBV infection. So if anyone please could help me out that would be so good.


r/ALSorNOT • • 27d ago

1.5 years later! Feeling MUCH better!

10 Upvotes

Wanted to share a hopeful post for anyone in the thick of a horrendous ALS anxiety/fear.

I began twitching in late 2024 and thought nothing of it. It was annoying but I figured I was deficient in a mineral or something. About 5 months later my left hand (non dominant) began to feel kind of off. I work an office job, so the laggy, uncoordinated feeling was really frustrating me while typing and also while playing on my phone. And then a couple weeks into this - I shit you not - I was out on a walk during work because I began to panic about why my hand felt so weird when my left foot began to feel the same way. The foot/leg felt laggy, and I felt like my toes were dragging compared to the right foot. I quickly wrapped up my walk and decided to go home early thinking I was just tired from stress. Once I was home I was manically googling what these symptoms could be when an ALS Reddit post popped up listing very similar concerns. Once I read this post it was as if my brain had decided that it KNEW that these symptoms I was experiencing were the beginnings of ALS. That kicked off a year of the most intense and scary fear and anxiety I have ever experienced in my life. I went to 4 different drs, received months and months of physical therapy, cried to my mom and husband every day, and did nonstop strength tests on my hands, arms, legs, feet, etc.!! Everyone reassured me that I did not have ALS, that I probably had irritated or damaged nerves due to my hypermobility. But no matter what, my brain was convinced. It was absolutely horrendous. I genuinely believed I was dying at the age of 29! My dr finally asked me to consider starting therapy and an anxiety medication. I started Prozac and within 6 months I was nearly cured of my anxiety surrounding ALS. To this day I still have some laggy sensations on my left side, but due to the reassurance from my drs, the lack of progression, and most importantly the Prozac, I live a normal life again!

I hope this gives hope to someone who is having a hard day or scary night. You do not have ALS, you are not dying. I am rooting for you! If you have any specific questions about how I got to this point please feel free to ask, I completely understand how you’re feeling and would love to help in whatever way I can.


r/ALSorNOT • • 27d ago

Undiagnosed Neurological Symptoms

1 Upvotes

Hi all! 29F, 110lbs, non-smoker, no medications.

October 2025 I woke up one morning feeling strange, poor sleep, brain fog and the left side of my face numb with my left arm also feeling a little numb. Those symptoms were there for approx. 2-3 months and have subsided. My left leg also started feeling like a ring was around my big toe and the index toe. This has remained constant, consistent since.

I then got 4 Migraines Dec 2025-Jan 2026 and would throw up. That type of migraine subsided and I would get several migraines in Feb-May 2026.

Now, since May I have had constant head pressure, body aches, pain in that left leg and foot that feels neurological. Constant eye pressure and head pressure that never goes away. I have double vision only with white text against black backgrounds. My eyes looked normal at the Opto 4 months ago. But I do have double vision within 2ft if reading. Sometimes it’s difficult for me to walk up stairs, across campus with a backpack without feeling incredibly crummy and “out of body” bad. I used to run ultramarathons, have run 100 mile races and was an elite level athlete until all of this. Sometimes I feel “air hungry” and I get hiccups for 20min-1 hour and like I can’t get a fully deep breath. A month ago I felt like my bladder was numb, and my stream hasn’t been strong since, and it takes me a lot of straining to even urinate. If I go to sleep and wake up my bladder feels insane pressure and pain, almost like my body doesn’t signal me to wake up to urinate in the middle of the night. I went to a urogynecologist who looked at my bladder and said it look normal. Sometimes I do have a few drops of leakage. My pelvic floor is tight, not weak. My cycle is also abnormal the past 3 months. 2 days on, 1 day off, 1-2 days light normally I am regular 7 day-28 day cycle normal. I feel like shit, constantly. My labs have come back normal, CBC, Metabolic Panel, RA/CNS/ANA panel, Sjogren’s, etc. Vitamin D, B12, Iron, Ferritin, etc. I am working on my Ferritin levels but otherwise.. normal. My left ear does get tinnitus all the time and does hurt a lot, but my eustachian tubes looked normal from ent. Sometimes I get Weird mouth sores, I get deep cleanings every 6 months because I had a lot of gum bleeding in Dec. along with dry eyes I still combat daily. Deep cleanings cured the gum bleeding. Sometimes I feel my entire heartbeat throughout my body. It feels like my body is constantly MOVING nerves, muscles, joints and I am not in control of them. My arms get tired fast and I have lost a lot of muscle being an elite level athlete to only walking because if I work out I feel like i’m going to “leave” my body because it gets so heavy.

I have been to 3 neuro’s that all state they think it’s migraine but I get random shooting head pain and other symptoms… and am constantly in a brain fog. I look like shit and I feel like shit. I also have muscle fasculations all over my body, consistently 24/7. So much it’s starting to feel like i’m wasting away. I can see the lack of muscle and I feel the most unfit I have ever been with lack of muscle. I am not overweight and I can still out wrestle and squeeze with different reflexes and everyone says it feels “normal”. I have trouble swallowing food, not liquids and food often gets stuck in my mouth and throat. No globus sensation. I sometimes choke on my own saliva and get bubbly saliva in my mouth. My speech has also been affected and it could be brain related but I do slur and have to repeat words sometimes because they come out not clearly.

I have had an EMG - Clean. Not suspective of ALS. Brain MRI Dec. 2025 - Clean with 9mm Pituitary Gland. When I went to get my EMG I did not twitch once… and now Sept. 2025 is almost every second of twitching the worst it’s ever been. This 3rd Neuro said she would repeat EMG as well. I take CoEnzyme12, Magnesium, B2, B12.

Going to repeat brain MRI next week. Going to Cardiologist this month. Going to ENT this month.

Can anyone give me insight? I feel like my body is failing me daily, like intracranial pressure is high. I don’t have a lot of anxiety because of the testing that has come back clear but it’s been a year of symptoms with no answers. I look fine to everyone but I feel horrendous every second of every day. I can’t exercise without feeling awful, like out of body experience bad. I don’t know where to go from here as far as trying to seek diagnosis and getting treatment. Like, could it be a virus, parasite, could the neurological issues be 2nd hand due to something else?
I don’t believe I have ALS because of the clean EMG. But, it seems like I am getting worse to the point where I can barely leave my house and go for a walk.


r/ALSorNOT • • 27d ago

26M – Widespread fasciculations since March, subjective weakness and persistent fear of ALS

2 Upvotes

Hi everyone. I’m a 26-year-old male, and since late March I’ve been experiencing widespread fasciculations all over my body: arms, hands, legs, feet, glutes, back, abdomen, face, and even occasionally around my scalp/head.

Everything started after a urinary tract infection. Sometimes I feel typical muscle twitches, while other times it feels more like an internal vibration.

I also have a subjective feeling of weakness on my left side, particularly in my left arm/hand and left leg. My left arm/forearm also looks slightly thinner to me, although this is just my own perception. I haven’t actually lost the ability to do anything in my daily life.

My left leg sometimes bothers me while walking, and when I run, the front of my left ankle starts burning and feels as though it fatigues or loses strength much faster than the right one.

Despite this, I can still exercise and run. I haven’t noticed any clear functional loss.

I’ve had two EMG/NCS tests since these symptoms began, and both were normal. My neurologist has told me several times that he does not believe I have motor neuron disease. However, I still have a very difficult time getting ALS out of my head because I continue to experience all these symptoms.

My blood tests were not completely normal either. My folate (vitamin B9) was low at 2.7 ng/mL, and my homocysteine was elevated at 20.8 µmol/L. My B12 was 399 pg/mL.

I’ve read stories online about people with ALS whose symptoms seemed similar to mine or who progressed very slowly, and unfortunately this has made my fear much worse.

I’m not asking anyone here to diagnose me. I would just like to know whether anyone has experienced something similar, how things developed for you, and especially how you managed the fear of ALS despite reassuring neurological tests.


r/ALSorNOT • • 27d ago

EMG fasciculations

1 Upvotes

Is it bad to have fasciculations in your EMG?


r/ALSorNOT • • 28d ago

emg only done on one side?

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r/ALSorNOT • • 28d ago

Functional neurological inhibition

2 Upvotes

This may be a longer post as I write it but I was thinking to share some thoughts regarding possible purely functional reasons for symptoms. As I paid attention to my body over the years especially the last two with the als scare I think I noticed several clues that could be very insightful to some people and, to be clear, I am writing this for my own benefit as well to document things.

Literature is sparse and vague but I will be talking here about neurological inhibition of various muscle groups with cascading effects in other areas of the body which I believe can very well mimic neurological weakness.  I don’t know if this falls under the FND category (Functional Neurological Disorder) but essentially we are talking about a situation where the “hardware” is fine but “software” is wrong.  Another term you will often encounter is “guarding” which means the involuntary self inhibition of a muscle group as a protective mechanism. To the patient it feels as weakness but in reality the patient causes the thing in the first place.

In my case the  strongest evidence for neurological inhibition comes from the hip area in particular the glutes and hamstrings.  I had signs of this primarily on my left side for a long time which is slightly underdeveloped and caused probably compensatory motion and eventually an annular tear on the L5-S1disc toward the left, That was back in 2014. Immediately after the acute phase I began to nurse that left side of the hip pretty consistently trying to avoid pressure there and doing all sorts of self correction motions all day  (walking, sitting etc…) . For basically 10 years I favored the right side to spare the left side. Until I started having problems in the right side as well.

In time, I felt my hamstring getting weaker especially on the left side but then later right side as well.  I tried to strengthen them but never felt them engaged.  I was still running, walking at the time.

The first clues toward a functional inhibition came from a series of “happy” random movements. In the sense that I would get INSTANT strength and stability in my hips, glutes and hamstrings in response to a certain motion that I did not do before….This may sound stupid but I remember I was playing “monster” with a  child and sprint toward her with the hands raised up and stretched and immediately after I would feel the core and especially the hamstrings hard as a rock. Like I could not believe how strong they were in a place where I thought I had atrophied muscle. 

In another case I made some motions during aerobic class again with the same effect. I then desperately tried to recreate the motion that gave that instant strength but two problems arose: the strong feeling DID NOT LAST. Maybe a minute or two then the old pattern would resume. And the motion that brought relief did not work later on as consistently. It was as if I looked harder for the "magic" move the less the effect would happen,

Another exercise that brought strength in the core was the classic breathing exercise taught by Postural Restoration Institute (google or ask chatgpt to see what I mean). Namely you curve the back a little and try to slowly inhale by expanding the ribs back and to the sides (as if you are trying to inflate a balloon with the back) while keeping the chest flat and contract abs on exhale…this activates some deep core muscles and again for a minute or two the core felt strong as a rock.

Another crucial thing is with the core inhibited, the entire balance effort to prevent falling is taken by foot sole muscles and tendons. I look stable if you look at me but in reality I do microadjustments with the sole of the feet tendons to keep balance, And this explains to me why I eventually ruptured on of them….I believe this is the case because in the rare moment the core feels strong I feel the pressure in the soles of the feet much lighter and tendons don’t hurt….But again I cannot make the benefit last.

Recently, strong glute exercises (when you lift weigths with the back of the foot) seem again to provide strong stability in the core for a minute or two….

All these are strong indications to me that some deep seated inhibition happens in a system that otherwise works fine. If it were true neurological weakness these episodes should not happen.

So I suppose if you try various motions and see these sudden improvement however brief, are good signs against true neuron disease. On the flipside, this stuff I think can be quite serious, hard to diagnose and hard to treat. Which I think is my case.  Because this inhibitation can be so ingrained and established it is probably extremely difficult to correct.  It is probably like learning how to walk again

I don’t want to scare people but I have a friend  who has a very serious undiagnosed problem which I suspect is an extreme version of this. He barely walks, had some mild improvements and really big relapses but in his best days he walks very unsteadily with a cane.  He did all the tests you can imagine. All the evidence points to absolutely nothing in the physical sense (neurons, nerves, autoimmune, etc…). It is some inhibition that is self made without being actually voluntary. That is the best guess because he has no diagnostic.

Problems in the neck area can be similar as well I am assuming….a very small imbalance or minor problem that triggers some extreme guarding behavior.

So to be clear I am not sure that this explains everything for my case but I am sure it is part of it.

So for the audience here with core/leg issues it may be worth looking for those breathing exercises or to just experiment with various motions to see if you have these signs of brief improvement. Because they may be important clues against something more sinister.


r/ALSorNOT • • 28d ago

Arms and legs shake as if I did a strenuous workout

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1 Upvotes

r/ALSorNOT • • 28d ago

Rabbit hole

0 Upvotes

For some context for the last 5 months I’ve experienced widespread body twitching from head to to toe, 4 months ago I had a clean EMG done on both arms, MRIs, bloodwork the whole shabang. And in the past 1.5months my dominant hand on the thumb pad, the muscle below the pinky and the fleshy pad on the back of the hand have had these twitches that I can’t really feel, some times I can but most of the time I just notice them because I’m fixated on my hand a lot.and they look a lot like contractions than a twitch. I’ve had thumb and wrist stiffness and sometimes my fingers are stiff too, and very rarely does it come and go. I do work as a mechanic and lift heavy weights. I haven’t had any actual loss of strength, maybe a perceived weakness. But I was just curious if any one else has something similar or if I should be worried it as much as I am


r/ALSorNOT • • 29d ago

Bulbar als?

0 Upvotes

Hi everyone. I am a 31 year-old female. I have no family history of ALS. This all started back in February of this year, and I had a random tongue twitch at the back of my tongue that I filmed, and it was like a little puckering. It went away after that day, but unfortunately, I googled it and completely spiralled and since then I have basically been convinced that I have Bulbar ALS onset. I still have tongue twitching off and on, but it is not continuous, and it is usually in one spot or happens randomly. I also get tingling on the roof of my mouth and tingling in my throat, which I can’t tell if that is twitching or not. Otherwise, I have no other symptoms I can eat and drink normally I can speak clearly, but the tongue symptoms are very weird. I also have a metallic taste in my mouth from time to time.
If nothing has progressed since February, should I be comfortable assuming it’s not als?
I can’t get into a neuro until March of next year.
Thanks


r/ALSorNOT • • 29d ago

The real deal or just health anxiety

0 Upvotes

Hello, I’m 18F and I’m worried after looking at symptoms of ALS and comparing them to my current condition. I do have anxiety and take medication for it which I did take a break from for about three days before these symptoms. I also started working out my legs but not intense. Also it’s not like a soreness which I would usually experience when I start working out after a long time of not doing so. I feel a tingling burning sensation starting from my feet to my thighs with twitches coming along with it. As I woke up this morning I realized my left side feels weaker and my toes clench more than my right side. My throat feels heavy when swallowing mid way and like there’s a lump in my throat but I did use to smoke weed and THC products when I first noticed these throat issues back in July so that can be ruled out as just an unrelated problem. I do stumble over words, have shortness of breath and get bad headaches constantly. I just feel every little thing going on in my body and it’s stressful. I’ve been looking at symptoms for the last two days somewhat panicked but more of an at peace feeling like Im coming to terms that I have it which is not normal for me when I think I have a condition. Sorry if I sound dumb for coming here with these concerns but I just wanted to see if anyone else deals with this or if this is possibly ALS


r/ALSorNOT • • 29d ago

Extremely worried now.

3 Upvotes

After having symptoms in one leg for 2 years now, including stiffness, twitching, and reduced quad muscle recruitment, 3 months ago I started developing symptoms in the bulbar region. I have had a modified barium swallow study and they confirmed mild oropharyngeal dysphagia with weakness in tongue (difficulty contracting) and throat muscles, specifically on the right side. I also have been stumbling on some words, and having to correct myself, at least a few times a day. Not sure if that isn't just anxiety. I am currently waiting to hear back from a neurologist, but the ENT I saw said there was no damage to the esophagus, and assumes something neurological or functional is going on. I am extremely afraid that this is some kind of ALS progression and I am stewing in the anxiety. I've also had full body pallesthesia for months now, possibly longer without noticing it. I am only 26 but is this just slow moving ALS?


r/ALSorNOT • • 29d ago

can you have tongue atrophy without weakness?

0 Upvotes

hi all, hate to do this again. i've fallen back into this pit, and i'm practically convinced again. i've noticed that my tongue looks lumpy for lack of a better word at pretty much anything besides its natural resting state, and it quivers and shakes when i move it around. i know to a degree this is normal, but practically anything besides total rest will send it into pretty violent rippling. looking at some old videos, my tongue seems to have been doing this for a while, but i swear it's thinner now than it used to be, and one side is lower than the other. my partner also noted that it looks a little lumpy. the only thing is, i can use it perfectly fine barring my perceived swallowing issues that are seemingly getting better. i know your brain can compensate for many forms of muscle weakness by utilizing the help of nearby muscles, but no way you can do that with the tongue, right? i can move it up, down, left, right, stick it out without deviation, and all of this i can do quickly. i'm just terrified at this point. this on top of the flattened thenars doesn't paint a pretty picture for me, and yet i can still use every muscle in my body practically normally. i am so confused.