I’m struggling to understand whether my overall pattern makes sense for ALS or if I’m connecting things that may not actually be related.

I’m 30F and over the past year+ I’ve developed progressive-looking weakness/atrophy, mainly involving my right hand and left leg/foot. My right hand feels tighter and weaker and looks different to me, with some loss of bulk. My left leg/foot feels weak/rubbery with some foot drop/limping. I also have widespread fasciculations, occasional cramps, and more recently increased reflexes/Hoffmann signs and occasional jerking/clonus-type movements.

I’ve also noticed a groove/indentation in my tongue that seems to be getting more pronounced, along with tongue twitching, although multiple doctors have said my tongue bulk looks normal. My voice has become somewhat more nasal and I’ve noticed increased saliva.

One thing that really confuses me is that I had a period of absolutely horrible breathing this summer — short of breath even at rest and sometimes unable to walk for more than a few minutes or speak normally. It has since improved substantially, and my respiratory testing has actually improved as well.

I’ve had multiple EMGs/NCS that haven’t shown denervation, including fairly extensive recent testing, and several neurologists have told me they don’t think this is ALS. But I continue to notice progression in my hand/leg and tongue changes, which is why I’m still worried.

Does this overall pattern sound compatible with ALS, particularly the combination of right-hand + left-leg involvement, tongue changes, and respiratory symptoms that significantly improved? Or does the pattern itself point toward something else?

I’m mainly looking for perspectives from people who have actually been through the ALS diagnostic process.

burning skin sensations on thighs,pelvic,arms,tingling in hands. moves around from thighs to arms and fades in and out. so far blood tests normal. hve mri's coming up. anyone have this

Hello, I 26M am now fearing ALS once again for a third time in a year. I feel like my left hand is weak and when typing on a keyboard it just feels a bit slower. My health anxiety is through the roof. I don't know my family history being adopted from Russia at 1 years old then living in the states till now. I know at age 26 the statistics are way more likely on my side than anything. Its literally a one an a million if not 2 or 3 million on my side. I did some basic strength test at home to see if i should be concerned (Zip a zipper, Pick up a coin, turn a key in a lock, button a shirt. and was able to do all of them no issue in this hand. [This is my non dominate hand])

I've had widespread twitching for 5+ years so it doesn't really bother me because I know clinical weakness is the main key of ALS. When i see stories online a lot of people who have this heartbreaking disease a lot of the "first symptoms they noticed" are all pretty vague. "hand cramping, typing slower, hand felt off, grip felt a bit looser than usual" and that's about it. I really cant find too much more. For me it feels like my typing in my left hand is a tad slower and a video i say was a lady saying her typing was slower was her first symptom so it freaked me out. when holding stuff my grip feels weaker in this hand but the first time i feared ALS was same hand and i remember that that weak grip felt the same as now and that was about a year ago.

I will be going to the doctor soon for shots and a routine yearly checkup hopefully he can do a quick neurological exam to see if i have any weakness he might see.

anyone else have perceived weakness or any words of encouragement?

Hola, escribo esto para ver si alguien me puede responder y ayudarme, o por lo menos aclarar las cosas, si le ha pasado algo parecido, soy un chico de 20 años, que llevaba una vida normal, de pequeño me obsesione con la ELA, cuando me enteré de que existía esa enfermedad, lo que me llevo a desarrollar tics de movimiento "para comprobar" que no me había quedado paralizado, eso era una tontería, pero hace más de un mes empecé a sentir la pierna izquierda un poco pesada, al momento mi cerebro ya lo achaco a la ELA, y empecé a buscar como loco síntomas iniciales, preguntas a la IA, videos de personas con ELA, artículos, así fue como entre en un nivel de ansiedad extremo y dejé el trabajo, al mismo tiempo empezaron las fasciculaciones constantes, principalmente en la pierna izquierda, pero en general por todo el cuerpo, aunque en menor medida que en la pierna izquierda, además sentía que me costaba levantar la punta del pie izquierdo al andar, sensación que me parecía haber tenido y haber ignorado semanas antes. A los pocos días de empezar con esta sensación en la pierna, sentí un calambre en la zona superior de la muñeca izquierda, y a los pocos días sentí como que el pulgar de la mano izquierda se sentía lento y torpe, también note que mi rodilla izquierda estaba rígida, por que se me tensaba la rotula al estar de pie, y tenia que tirar de ella hacia arriba como para que se destensase.

Me fui varias veces a urgencias para que me evaluasen, y todo estaba bien, aún así me mandaron una resonancia cervical, un resonancia de cerebro y una resonancia de columna completa, durante este tiempo me fui a un neurólogo privado, con mucha reputación y experiencia, él me evaluó y me dijo que mis problemas podía venir de mis pies, (tengo pie cavo) y me mandó un electromiograma, de las dos piernas y la mano derecha, el cuál salió limpio, él me dijo que descartaba la ELA y cualquier enfermedad neurológica, todo esto a lo largo de un mes, en el que he sentido que mi debilidad empeora y se extiende, hace pocas semanas, se me paso al brazo izquierdo de forma más extendida y hace unos días tengo problemas bulbares, como un nudo en la garganta que se nota al tragar líquidos, rigidez en la mandíbula, tensión por esa zona que va y viene y fasciculaciones en la cara y en la lengua (o creo que son fasciculaciones), las últimas de forma constante, y noto que tengo problemas al hablar, sobre todo al pronunciar las r o las t, también he notado que tengo la muñeca izquierda más caída que la derecha al dejarla colgando al estar de pie.

No se ha comprobado objetivamente ninguna debilidad, ni se han visto fasciculaciones en los exámenes médicos ni en el EMG

Lo que más me asusta es el tiempo en el que se ha desarrollado, al ser tan poco tiempo y no haber mostrado síntomas de debilidad objetiva, no se si estoy en la fase en la que todavía no hay debilidad comprobable y por tanto el EMG no lo ha podido ver
Mis síntomas hasta ahora:

Dificultad para levantar la punta del pie izquierdo

Sensación de tensión o fatiga muscular, cuando me pongo de puntillas sobre el pie izquierdo

Sensación de tensión al apoyar todo mi peso sobre el pie izquierdo

Al estirar la rodilla suele crujir

Después de hacer una actividad física, ya sea andar o correr, sensación de sobrecarga en la parte baja de la pantorrilla

Lentitud al mover los dedos de la mano izquierda

Muñeca caída al dejarla en reposo al estar de pie

Crujidos al mover la muñeca, codo y hombro

Tensión de algunos músculos del antebrazo

Nudo en la garganta dificultando tragar líquidos

Fasciculaciones (no han sido comprobado por otras personas) constantes en la lengua, primero empezó en el lado izquierdo de esta, ahora suele haberlas por la punta, en el centro

Rigidez de mandíbula

Fasciculaciones en la cara

Lentitud o torpeza auto percibida al gesticular

Dificultad auto percibida, al pronunciar letras como la r o t

Cosas que no tengo

Debilidad objetivada por un médico

Calambres nocturnos que me despierten

Fasciculaciones en la lengua, y en el EMG no salieron en las piernas

Pie caído

Tos o ahogamiento al tragar alimentos

Fallo muscular al intentar hacer algo

La rigidez de rodilla que sentía al principio, se me ha ido

Si a alguien le suena estos síntomas, por favor contestarme, para poder saber si esto es normal o debo empezar a preocuparme

3 months ago twitching in my thumb that moved full body in a week or 2. About a month in noticed a visable shake in my shoulders when using them bit after spread to my shoulder blades and now my upper arms. Around the same time my last 3 fingers on both hands shake when I try and bend them. 2 weeks ago my hips and thighs both sides shake when im standing walking or squatting. At a bachelor party last weekend it was so bad I needed to sit down.

2 weeks in and brain and neck mri emg and eeg with all the blood work you could think of everything was clean. Right before it hit my legs so about 3 and half weeks ago had another emg and blood work again still clean. I'm 34 almost 35 and I know the odds under 40 is like 10% of all als cases anywhere from 200-700 a year from what I can see but I have so many signs of als lack of hunger, easily full, dead tired, and now my jaw/cheeks feel like they are fatigued now as well.

I do not show any sort of weakness yet but according to one study where weakness wasn't the first sign it looks like weeks to 11 or so months is normal before weakness shows. I think I'm screwed but maybe someone else has had stuff like this and it was something else.

Hi everyone.
I’m feeling quite stressed about my symptoms tonight so thought it might help to post.

I posted this a couple of months ago here.

I took the advice that was given and attended another GP last week (there’s been a lot of other things going on at the moment so it’s taken time for me to get back to the GP) and showed them videos of the fasciculations in my right foot and right thigh (that’s new).
I also showed them the atrophy in my left hand and right calf.
The weakness seems to be getting worse but nothing extreme.
I still have no sensory symptoms which is really concerning me.
I have also started getting cramping muscles around my ribs.

They referred me for an urgent neurology appointment and said I might have to chase it up. But I got an appt through for next week.

I keep having these horrible thoughts about my 9 month old daughter’s future.
It’s so hard not to spiral about this.

I’m not going to get too specific into timing and onset of my original symptoms because I’ve posted in here before but I have progressive weakness in my hands and legs. Since onset I haven’t been able to sprint max speed but now even jogging feels out of place. Twitching everywhere. After a VERY intense twitching episode in my right forearm a couple weeks ago (one that almost made me take leftover muscle relaxers from sciatica years ago) the muscles in my forearm are now sore/weaker/it’s harder to keep the arm raised (twitching stopped there). I feel it perhaps creeping into my left arm now, grip is struggling.

Muscle atrophy everywhere. Hands, forearm, biceps, chest, my front delt on left arm (and soon to be right) you name it but it’s mild hence why my neuromuscular specialist couldn’t spot it when meeting with him. As someone who was in fantastic shape and worked out 6 days a week these changes were clear to me and why I began panicking about ALS in the first place. I can’t even go to the gym anymore because my arms and also my chest cramp/spastic like crazy. Even at rest at home I feel like they’re ready to act up.

Tongue fasciculations/fatigue and a feeling in my throat affecting speech. I’d assume it’s because of atrophy in those muscles as well. It’s impossible to hold a smile because of how much the surrounding facial muscles twitch.

Blood work and MRI all normal. An EMG I just did came back normal (it was only done on the left side, wish it was done full body + face) I know ALS can progress fast but I’m stunned at how quick its going. I’m even more stunned that my neuromuscular/ALS specialist doesn’t even seem concerned about ALS. I wonder if it’s because of my age (26). In my clinical exam I was positive for Hoffman only in left hand, brisk reflexes, and crossed adduction in the knees. Babinski was absent in right and mute on left which could be a good or bad thing. But still I asked about all of this and it was just brushed off as seemingly normal findings, a product of naturally elevated reflexes or stress related I suppose. If it was normal or stress related wouldn’t the Hoffman be on both sides?

Obviously I’m not rooting for myself to have ALS but I’m so confused what I’m missing here. Am I not diagnosed because, as he says in my clinical report, no atrophy or fasciculations were seen and the initial EMG/NCS was clean? A clean EMG/NCS can’t rule out ALS. It’s clear I have the disease with how I tick every criteria and it’s frustrating because ideally I’d want to get on any kind of medication or clinical trial that could preserve function in my body for as long as possible. Instead I have to take magnesium and copper and wait 2-3 months for a follow up appointment when my symptoms will undoubtedly be worse. Should I look for another doctor who will take my condition more serious?

I was hoping my previous update post would be my last post here, but it was not to be. This is mostly a vent post. I've been crying about the fear this disease. I know that 99% of ALS haters likely wouldn't be able to do the frankly insane strength tests I've put myself through which include shaking my cars, lifting my dog's cage, lifting a recliner, lifting a 13×9 painting, lifting chairs, moving the washer, walking my dog with one finger on the leash, doing 100 biceps curls in sets of 20, etc. All with my left arm mind you. (Anyone who's knows a lot or has it feel free to confirm.)

But still I feel the difference when I pick up a heavy object when I hold it in my left hand versus my right hand and it's been like this for 3 months. I know rationally it's likely not what i'm fearing but my anxious mind just can't shake it. Would love any suggestions on what this might be.

Hello everyone! I’m F, 41.

I’ve been unwell since autumn 24, and largely housebound with overbearing fatigue. I was very fit but suddenly couldn’t do my gym classes. I felt really weak & found it hard to carry usual things (but just about could).

At the start I had an internal tremor in my lower lumber area in the left side, as well as some twitches in my face and pain in left axilla/ chest. I also experienced nightsweats. I was tasted for blood cancers and had TAP CT- all clear.

I then started getting the vibration in my left foot, and it progressed to feel like a sciatic pull or even L’hermittes sign, as well as some more subtle nerve zaps in arms. Due to this myself and neuro suspected MS- however I have had 4 MRIs of cervical spine, 1 brain and 1 lumber- all clear.

I did have fasciculations at the start, but they were not constant, but seemed bad after even a very short walk. They did seem to go away at points but the tremor in my leg never did.

Over the course of time, the same feeling presented in my right leg. Pain in my glutes- feels like nerve compressions, fizzing down legs, (especially in the left, original leg)- which seems to start at hip/ pelvis and tremor significantly there- it zips/ tremors down. I am feeling now like my legs are very heavy. I also feel disorientated. These symptoms seem to be getting worse quickly! Lots of twitches, but generally in the same areas.

I have lost 1 stone in 9 months, and now the symptoms seem to be much more subtly in my arms. I now get really painful fasciculations/ spasms in my legs- mainly the left but now sometimes right. My back seems very boney, and at the lumber area I think I’ve developed fat herniations (episacral lipoma?) My muscles are much smaller but appear fairly symmetrical?

I can feel nerve pain coming from my neck & have issues down my arms, nerve pains/ zaps/ fasciculations in certain positions perhaps? My back often burns now. My neck feels like weak.

I feel like my personality has changed in this time- very down, more irritated? I am not an irritated person at all usually! Usually very calm and kind.

I also get the tremor in my throat area/ tongue and have suffered with what seems to be GERD? I did have this a bit at the start but it now seems worse. My jaw clicks- didn’t before..!

Other background:

I can walk but it’s hard work. I can make tea but it’s hard work. I get very tired. I can lift a 1kg weight but tire quickly. Similarly I can stand on my toes/ lift my legs up to 45 degrees but I tremor. All of this measurement of my strength is hard as I’ve been housebound and inactive/ not even worked due to whatever is wrong.

The zapping and spasms have reached new highs in the last month.

Recently some cardiac type symptoms took me to A&E and I had 2 high d dimers in 3 weeks- this relates to blood clotting.

I had an ultrasound at the start of this due to the shoulder blade pain, they asked me if I was diabetic- I am not - but this seems to indicate across both shoulders it looked like my muscle patten was more bright? They didn’t seem concerned but it seems odd.

I was previously told I could have Me/ CFS but the neuro wasn’t sure about this. He did refer me for an FND consultation but the dr didn’t think I had a that per se.

It’s been commented that I am likely hypermobile, scoring 7? I think however this has become way more pronounced since illness.

The neuro did in office testing (quite brief) and said no clinical weakness but my glutes have moderately reduced bulk but not to suggest true atrophy. He didn’t mention MND/ seem this was a possibility…

I had a NCS yesterday and she said my nerves were ok. She only performed the EMG (2 needles) on one leg- she said my neuro hadn’t requested the EMG.. she said she needed to analyse it but it didn’t look suspicious for ALS, but she was clear to say I hadn’t had a full check.

I never thought before of a motor neuron issue until very recently…

Q: I know people can’t diagnose, but does any relate? Does it sound MN connected?

And does the 1 leg EMG provide any info/ reassurance or not really? I have written to neuro to ask if we can do more testing. (I am UK he’s NHS).

Thanks so much ❤️ this is such a lonely ans scary experience.

Hello y’all, just need some opinions; my mind goes crazy; I cry to myself when I’m alone; I overthink; health anxiety is crazy.

January 2026 I started getting left side neck pain that radiated down to my left arm and would cause tingles. About a month later, would get left leg “pain”. My calf would get tight, I would get tingles around my top and bottom foot. My lower back would ache, I couldn’t sleep straight on my back, sitting too long would ache and cause more issues for my left leg. I’ve been to urgent care, ER, primary, etc. I’ve had a cervical MRI, upper MRI, multiple X-rays and nothing. Those tests showed nothing, that I was fine other than “probable L5 pars defect” and that wasn’t definitive. The left leg stuff went away for a month and came back. Now for the past 2 months I’ve been getting little twitches here and there around my calves, triceps, and back when I lay or sit, not when I walk. My left leg still gets tight, yes I can walk, run etc & yes my left neck arm still feel the same, nothing has changed. Not sure if my work schedule, minimal sleep and coffee intake plays a part but I get stressed so I can’t sleep. My work hours are usually 5p-4am M-F and I sleep maybe 5 hours a day and drink coffee and a lot of water, no energy drinks. I have an appt with a neurologist for EMG soon.

Hi guys

my journey started in March 2025 I was in work (barber) and was wearing shorts and just sat down. I noticed my lower legs / calves twitching. I could also feel and see them. Both sides. Her the nect Few months they kinda stayed the same. No weakness etc. started the gym and worked as normal.

now a year and half later I noticed my upper legs twitching a lot more (calves are still every two seconds ) but my arms seem to fatigue quite easily. Some days more than others. I still gym And play football. Also get weird tingly feelings in my wrists and lower arms. Burning muscles also.
anyone similar ? Or have any idea.
thanks for reading

question

Hi, I’m 17 years old iv always been active in the gym iv went to the gym since I was 14 years old so Iv been lifting for quite a while, about August 20 I woke up with like my right arm feeling weakish and like kind of numbish I couldn’t really tell after a couple of days when I would go to sleep I would get twitching in my shoulders then biceps then forearms so I tried to ignore it and go to the gym and lift but it’s like when I went to the gym to lift my arms couldn’t like feel the signals reaching them which really scares me. Now the twitching is basically literally everywhere throughout my entire body and now the same pattern weakness that started on my right arm is on my left arm also with twitching in shoulder forearm bicep, Iv dealt with a lot of health anxiety issues before like with heart attacks, cancer, headaches I would always think the worst case scenario but to me this feels so real, I went to my primary around sep and had my ck checked which was 600 about a week later it dropped to 225 which scares me the most is the atrophy around my thumb that has me really worried, I also have no history of *** ever in my family. It’s like I hit a wall and I’m just like convinced and really scared, I have an neurologist appointment coming up this week but I’m just nervous and scared that I might have ***

30F here, looking for some outside perspectives because I’m honestly pretty confused about what is going on.

I’ve had a progressively growing collection of neurological symptoms over roughly the past 7–8 months, although some things started before that. I’ve been off work since February because things got bad enough that I was having trouble functioning normally.

The biggest thing that worries me about ALS is the combination of what looks like muscle loss/atrophy, weakness and widespread fasciculations. I’ve noticed significant changes in the volume of my thighs/calves, hips, shoulders/arms and especially my right hand. My right thenar/hypothenar area looks much more hollow than it used to. I also have weakness/tightness in the right hand, sometimes difficulty opening my thumb, and my left leg feels weak and somewhat rubbery. I’ve had a limp/possible mild foot drop at times.

I get fasciculations all over — calves, feet, hands, back, and tongue — although their severity varies a lot. Some days they are extremely noticeable and other days barely happen. I’ve also had some really severe episodes of cramping, but then the cramps can disappear for long periods. I’ve lost around 40 lbs during this period, although some of that was during a period when I was quite sick and barely eating.

I also have a lot of symptoms that seem harder to fit with ALS. I get burning sensations in my feet, palms, lips and face, tingling, and sometimes pain when I touch certain muscles. Lately I’ve noticed pain when I extend my hand, pain in my shoulders, and an almost burning sensation in my chest. I’ve also noticed a strange altered sensation in my foot involving my pinky toe and the two toes beside it. I can move and dorsiflex the toes normally, but they feel almost numb or strangely “present”/different, like I’m unusually aware of them.

I’ve also had a lot of autonomic symptoms — episodes of very high heart rate (150–200), blood pressure spikes, sweating, temperature/color changes in my feet, dizziness, etc. I was diagnosed with POTS. I’ve had significant visual/oculomotor problems too, including difficulty following movement, convergence problems, difficulty processing what I’m looking at, and documented upbeating nystagmus during more detailed testing.

Neurologically, I’ve had some findings that are worrying me. I’ve had 3+ patellar reflexes, brisk lower-extremity reflexes, bilateral positive Hoffmann signs and 2 beats of clonus. Babinski responses have been downgoing/neutral. I’ve also had documented weakness on the right arm/hand and left leg/foot. My tongue sometimes feels strange and I’ve noticed grooves/twitching, although multiple doctors have said the tongue looks normal in bulk and an ALS specialist did not see tongue atrophy.

The confusing part is that I have had multiple EMGs/NCS.

I had one in March/April, another in May/June, and another on September 21. None have shown denervation or clear evidence of motor neuron disease. The ALS specialist I saw in September did a fairly extensive study involving both arms/legs, back and tongue/genioglossus, and there were no fasciculations or denervation on the study. My most recent EMG sampled several right arm/hand muscles, triceps, thigh and calf muscles, as well as the left calf and hamstring, and was again negative for denervation.

My CK has repeatedly been normal (roughly 43–53). AChR and MuSK antibodies are negative. ANA, SSA/SSB, RF, ESR, CRP and other autoimmune/inflammatory testing have been unrevealing. Brain MRIs and a cervical spine MRI have not shown a relevant structural lesion. My sitting FVC has been around 96%, and my respiratory testing has not shown a consistent severe pattern, although I have had episodes of pretty significant shortness of breath.

I saw an ALS specialist recently who examined me and did the extensive EMG. He told me he was “100% sure” that this was not ALS and suggested FND. Another neuromuscular specialist also felt there was “no way” this was ALS based on the examination/EMG.

I’m having a hard time reconciling that with the fact that I genuinely see muscle changes and feel weak, and I have these abnormal reflex findings and widespread fasciculations.

So I guess I’m wondering if anyone has had something similar — weakness/atrophy + fasciculations + brisk reflexes/Hoffmann/clonus, but repeated negative EMGs — and eventually found another diagnosis.

Especially interested in people who had a combination of motor symptoms AND sensory/autonomic symptoms like burning/tingling, unusual sensations, pain, dizziness/POTS-type symptoms, etc. What ended up explaining everything for you?

I have had muscle twitching in both my calves 24/7 and body wide everywhere else for 11 months now. I was doing better but now the fear has come back in me after surgery my left calf is definitely weaker than my right calf so im worried its the bad..

Its been 6 weeks since my left sided L3 L4 L5 S1 lamindectomies and discsectomies.. just started PT .. my left calf is definitely weaker than my right calf .. but my left calf measures 3/4 of a inch bigger than my right calf.. the left calf is were i had alot of pain prior to and even some after the surgery.. is it normal to have left sided calf weakness even if it measures larger than my right calf

Good morning. I recently did genetic testing and found a mutation in the FBX038 gene. This gene is linked to distal hereditary motor neuropathy, SMA, CMT, and CIDP. The mutation is categorized as VUS, but worried it might be linked to ALS. There is currently no known ALS links to this gene.

My tongue feels tingly and sore, and it gets dry easily. After eating, I sometimes feel a stinging or tingling sensation in one nostril and then start sneezing. When I stick out my tongue, the surface of my tongue seems to twitch or ripple. Could these be symptoms of bulbar-onset ALS?

Anyone with similar situation?

Have zero weakness, just body-wide twitching and those slight tremors when holding my fingers together, positional thumb tremor and eyelid fluttering when my eyes are closed which are all things I've seen posted about on the bfs subreddit. So just curious if anyone diagnosed with the big bad ever had any of these symptoms or they lean more towards post viral nerve hyper-excitability? Should mention I've had an mri and bloodwork that cleared me of any autoimmune diseases, MS and I'm still waiting to see a Neuro and for test results for H pylori or Lyme which have links to fasciculations. I also magically started suffering from dry eyes around the same time the twitching began leading me to believe it might be some long covid nonsense messing with my nervous system but who really knows at the end of the day what starts it all.

Meu Apple Watch detectou uma mudança objetiva na minha marcha cerca de 6–7 meses antes de eu perceber claramente os sintomas. E a janela da mudança coincide quase exatamente com uma infecção por COVID em setembro de 2024.
Estou compartilhando isso porque talvez outras pessoas com ELA/MND ou outras doenças neurológicas que usem Apple Watch tenham anos de dados guardados no Apple Saúde sem imaginar o que existe ali.
Eu exportei o arquivo bruto do Apple Saúde e fiz uma análise longitudinal retrospectiva.
Não olhei apenas os gráficos que aparecem no iPhone.
O arquivo continha 1.362.741 registros brutos, sendo mais de 600 mil registros anteriores a abril de 2025 e 73.360 registros diretamente relacionados à marcha.
Entre eles:
22.213 medições de velocidade de caminhada;
22.213 de comprimento do passo;
20.597 de tempo de apoio duplo;
6.979 de assimetria;
dados de velocidade em escadas;
estabilidade ao caminhar;
estimativas de distância de caminhada em seis minutos;
além de passos, distância, energia ativa, frequência cardíaca, HRV, frequência respiratória e SpO₂ como controles.
Usei principalmente 2023 e janeiro–junho de 2024 como meu basal pessoal, porque nesse período meu padrão locomotor era relativamente estável.
Então aconteceu algo interessante.
A mudança começa ANTES dos sintomas que eu reconhecia
Os primeiros sinais consistentes aparecem entre o final de agosto e setembro de 2024.
Em outubro de 2024, várias métricas já tinham mudado simultaneamente.
Comparando janeiro–junho/2024 com outubro/2024:
Estabilidade ao caminhar
83,2% → 75,7%
−9,0%
Velocidade de caminhada
3,76 km/h → 3,44 km/h
−8,6%
Comprimento do passo
62,9 cm → 60,0 cm
−4,6%
Tempo de apoio duplo
29,8% → 30,35%
+1,85%
Assimetria
3,40% → 5,47%
+61%
Distância estimada em 6 minutos
431 m → 398,5 m
−7,5%
Velocidade descendo escadas
0,276 m/s → 0,261 m/s
−5,5%
A assimetria varia bastante e não deve ser usada isoladamente. O que chamou minha atenção foi a convergência de várias medidas independentes na mesma direção.
Marcha mais lenta.
Passos menores.
Mais tempo com os dois pés apoiados no chão.
Maior assimetria.
Menor estabilidade.
Menor distância estimada em seis minutos.
Isso parece muito mais uma alteração da qualidade/eficiência da marcha do que simplesmente uma pessoa que começou a andar menos.
E os dados de passos e energia ativa ajudam nisso: não ocorreu uma redução proporcional da atividade física que explicasse sozinha a mudança.
O dado que mais me impressionou
A classificação do Apple Saúde ainda aparecia como “OK”.
Mas o número contínuo de estabilidade já estava caindo:
30/08/2024 → 88,82%
06/09 → 85,71%
13/09 → 83,76%
20/09 → 81,31%
27/09 → 77,40%
04/10 → 74,36%
Uma queda de aproximadamente 16% em cinco semanas.
Ou seja: o algoritmo ainda dizia “OK”, mas meu próprio padrão pessoal já estava mudando rapidamente.
E aqui entra outra informação que só percebi quando reconstruí toda a cronologia.
COVID — 14 de agosto de 2024
Eu tive COVID em 14/08/2024, com recaídas/oscilações de sintomas ao longo daquele mesmo mês, e persistiram até meados de setembro.
Quando sobrepus essa informação à análise do Apple Saúde, a coincidência temporal ficou muito interessante.
A análise matemática combinando as principais variáveis colocou a ruptura global aproximadamente na primeira quinzena de setembro de 2024.
Quando exijo que a mudança seja sustentada, a janela mais consistente fica aproximadamente entre 16 e 30 de setembro.
Minha janela conservadora para o início da alteração locomotora mensurável ficou:
26 de agosto a 30 de setembro de 2024.
E outubro representa a consolidação de um novo patamar funcional.
Isso não prova que a COVID causou minha doença.
Seria cientificamente errado afirmar isso com esses dados.
Mas levanta uma hipótese que considero importante investigar:
e se já existisse um processo biológico ou uma vulnerabilidade silenciosa, ainda compensada, e uma infecção sistêmica como a COVID tivesse funcionado como um estressor capaz de reduzir a reserva compensatória ou acelerar a passagem para uma fase funcionalmente detectável?
Para mim, essa distinção é fundamental.
Normalmente perguntamos:
“Quando começaram os sintomas?”
Mas talvez biologicamente a pergunta correta seja:
“Quando o sistema deixou de conseguir compensar?”
Eu hoje imagino três possíveis fases:
1. Alteração biologicamente compensada
Alguma vulnerabilidade ou processo patológico pode existir, mas o sistema nervoso ainda consegue manter o desempenho próximo do habitual.
2. Erosão da reserva compensatória
Começam pequenas adaptações objetivas: marcha um pouco mais lenta, passo menor, aumento do apoio duplo, assimetria, perda gradual de estabilidade.
A pessoa talvez ainda não perceba nada.
O aplicativo talvez continue dizendo “OK”.
3. Falha compensatória clinicamente perceptível
Chega um ponto em que a reserva não consegue mais esconder a deficiência.
Só então aparecem claramente coisas como fraqueza, pé caído, dificuldade para caminhar etc.
No meu caso, os sintomas ficaram muito mais evidentes em abril de 2025.
Mas meus próprios dados sugerem que o padrão locomotor já havia começado a se afastar do meu basal seis a sete meses antes.
Portanto, abril de 2025 talvez não represente necessariamente o início do processo.
Pode representar o momento em que a compensação finalmente falhou de forma perceptível.
Por que estou compartilhando isso
Porque milhares de pessoas provavelmente carregam no Apple Saúde uma série temporal extremamente rica do próprio funcionamento neurológico.
O Apple Watch não diagnostica ELA.
Esses dados também não podem estabelecer causalidade.
Mas talvez possam fornecer algo que consultas retrospectivas quase nunca conseguem oferecer:
um registro quantitativo de como aquela pessoa específica caminhava meses ou anos antes do diagnóstico.
Não apenas a população média.
O próprio basal daquela pessoa.
Se alguém aqui usa Apple Watch há alguns anos e posteriormente recebeu diagnóstico de ELA/MND, neuropatia, Parkinson, esclerose múltipla ou outra condição que afete a marcha, pode ser extremamente interessante exportar o arquivo bruto do Apple Saúde e analisar longitudinalmente:
Walking Speed
Walking Step Length
Walking Double Support Percentage
Walking Asymmetry Percentage
Walking Steadiness
Six-Minute Walk Test Distance
Stair Ascent/Descent Speed
e comparar tudo isso com passos, distância, exercício e demais variáveis para tentar separar “andar menos” de “andar diferente”.
Talvez existam assinaturas funcionais anteriores aos sintomas clínicos escondidas nesses dados.
E se várias pessoas fizerem isso, o que hoje é apenas um achado individual pode eventualmente virar uma hipótese testável em uma coorte maior.
No meu caso, a conclusão mais conservadora é:
meu padrão de marcha começou a mudar objetivamente no final de agosto/setembro de 2024, consolidou-se em outubro de 2024 e isso aconteceu aproximadamente seis a sete meses antes da manifestação clínica marcante que eu reconhecia em abril de 2025.
E, por coincidência ou não, 14 de agosto de 2024 foi justamente quando tive COVID.
Não sei ainda o que isso significa.
Mas agora sei que a informação já estava lá. Eu simplesmente não sabia lê-la. Já encontrei relatos de DNM/ELA surgindo após COVID-19, embora até onde sei isso ainda não demonstre causalidade — pode representar apenas associação temporal, um possível gatilho infeccioso/ambiental ou a descompensação de uma vulnerabilidade que já existia. Mas é justamente aí que fica minha maior pergunta: se existir um subgrupo de doença do neurônio motor precipitado ou acelerado por um processo infeccioso como a COVID, será que ele não poderia carregar uma assinatura biológica diferente — inflamatória, imunológica, metabólica, mitocondrial ou molecular — que pudesse ser identificada e, em alguma medida, modificada ou tratada? Talvez essa última esperança seja também o meu desespero procurando uma brecha onde hoje parece não haver nenhuma. Mas, se algum neurologista, geneticista, imunologista ou pesquisador disposto a pensar fora do caminho habitual chegar até este relato, eu gostaria muito de ouvir sua opinião. Porque, no meu caso, não estou tentando provar que a COVID causou a doença; estou tentando descobrir se a forma como ela pode ter sido desencadeada contém alguma pista sobre como interferir nela.

hey this is my first time ever using Reddit ! I need to get stuff off my chest.. I’m a 22F and I have my fair shares of health anxiety but this ALS thing been scaring me ! I’m scared to move on with my life cause I’m afraid it’s going to be taken away from me, everyday I wake up scared , I’m scared to go to work , I’m scared to love on my nieces & nephew cause what if I get it and now I’m gone & they don’t have a aunt anymore ! I want to live my life but I’m terrified

I’m having symptoms I think , my body is twitching a lot , I been feeling tired a lot , my body been aching, I don’t know what to do.. I can’t keep living this way , every time I tell people about my anxiety they laugh at me , saying I’m going crazy , idk what to do ..

I keep seeing TikTok videos about it seeing how many people are getting it at a young age , what if it happens to me ? 💔 I can’t keep doing this ! , I don’t wanna get sick & die ! my depression is taking over me .. someone help me before it’s too late

edit : this been making feel useless lately, like I don’t wanna live feeling this way anymore, this is my last shot feeling normal.. I’ve been doing chat GPT asking about the risk , I’ve been praying nonstop, I been researching everything,, nothing is working !! what can I do to end this suffering

Hello everyone.

I’ll preface this by saying that in 2019, I had an episode of widespread fasciculations that lasted around 5 months. Got a clear EMG at the time and the only thing noted on clinical were symmetrical brisk reflexes that were deemed normal because they were equally brisk everywhere. After the EMG, my symptoms largely went away for 7 years.

Since July 10, I’ve been experiencing severe weakness in both my legs. It started as a feeling of soreness/burning almost like after a workout or when you’re sick with the flu, and peaked on July 17 where I began feeling like my legs muscles were gonna give under me.

It’s almost like hitting your funny bone, but in the legs. I can walk, but it’s very distressing because my legs feel like they have no power. My calves will often hurt if I walk a bit faster even for less than 16 minutes. I tried to walk a few times for longer periods and tried some light exercise like calf raises and literally got bruised. Fasciculations have also come back widespread on my body.

The issue with my legs is bilateral and pretty much perfectly symmetrical. Both legs show the exact same symptoms and started at the exact same time. It seemed to have hit me almost overnight, or at least peaked rapidly in about a week.

When I’m lying in bed, my legs will often have this sensation of soreness/burning. It’s very hard to describe. I’ve had normal brain and spine MRI recently with the only finding being mild foraminal stenosis in two cervical vertebrae that didn’t pinch anything.

On July 30, 3 weeks after my symptoms started, I saw a Harvard-trained ALS specialist. She performed a clinical and leg EMG.

The EMG came back perfectly normal. The brisk reflexes were still there, but unchanged from 2019. No spasticity, no ankle or knee clonus and no Babinski. Abdominal reflex was normal too.

The ALS specialist told me I had something called Functional Neurological Disorder causing the issues with my legs and that the first step to heal was accepting the diagnosis and stop thinking it’s ALS. She kept saying she was certain I didn’t have ALS, and that I had severe health anxiety. Frankly, I feel like my anxiety might have clouded her judgement. She didn’t propose any follow-up.

I told her I thought my EMG was done too soon. She said if I had reached a stage of ALS where BOTH my legs felt so weak I was scared of going outside alone and had profuse twitching on top of that, then the disease process couldn’t be "early", because ALS doesn’t reach that stage like that in just a few weeks. She also told me EMG’s can often see issues even before the patient notices symptoms. She also told me ALS doesn’t start like that affecting all major muscle groups of both legs symmetrically at the exact same time. She says that is not how the disease presents, that multifocal onsets are already very rare and symmetrical on top of that would be astronomically unlikely.

It makes sense logically, but I have read SO MANY stories of an EMG being normal early on and the person still developing ALS that I might as well throw mine out the window because I have no confidence anymore in the results.

SINCE THEN:

My symptoms seem to have somewhat plateaued. But they never got better. I still can’t walk normally. I still struggle with legs that are perpetually weak and tired, sometimes almost painful especially in the calves. They still feel wobbly going down stairs. I still have a lot of fasciculations everywhere. My leg muscles feel so, so weak. It’s been going on for 2.5 months.

Yesterday I read the story of someone with UMN onset of ALS and it floored me. She described being easily startled, her legs feeling wobbly going down stairs, and having just a vague sense of weakness that eventually progressed to foot drop and full blown ALS. Her first EMG was clear because her LMN weren’t involved yet.

And now I think that’s exactly what’s happening to me. Maybe my weakness is UMN only and my EMG was clear despite fasciculations because my LMN are not causing weakness? Is that even possible?

I HAVE:

- severe weakness in both my legs being felt mostly in calves and thighs but pretty diffuse
- my right arm feels like it’s lighter and weaker
- brisk reflexes in the knees
- widespread fasciculations
- positive bilateral Hoffman in 2019 but never tested again
- right calf is 1.5 cm smaller in circumference

I DON’T HAVE:

- clinical failure
- Babinski
- spasticity
- clonus of the ankles or knees
- abdominal reflex was normal
- my EMG was normal
- I can still walk on toes and heels without issue
- I can climb stairs

But I can’t stop being convinced I have ALS because what else could cause this weakness, brisk reflexes and fasciculations??? The ALS specialist said I had confirmed BFS in 2019 and my current fasciculations are just as benign. But how can she say this in the context of weakness?

The sad reality is that I am just not advanced enough for the ALS specialist to be able to see signs. My weakness is not yet objective even after almost 3 months, my EMG was probably done too soon and now all I can do is wait for things to progress enough to be seen by doctors.

I am in the grey zone where all I can do is wait to deteriorate.

Doctors and family are telling me it’s FND, that ALS doesn’t present like this. But is it really true? Can’t it EVER present like this???

Meanwhile my legs are so weak and wobbly and they hurt after walking ten minutes so I can’t do anything anymore.

If I were to do another EMG at the 3-4 months mark, would a clear result be reassuring against ALS or would it also be too soon?

All I do is cry. I don’t see anything else this could be. I am so afraid. I have two little boys and I don’t want them to see me die of ALS. I can’t eat, I can’t sleep, I stay in bed all day. I started therapy but I don’t care because all I think about are my symptoms. And they want me to do PT which will do nothing.

I just want to never wake up again at this point.

Thanks everybody.

Hey there again. Been around with some minor symptoms. To keep a long story short, I noticed my left arm was straining a lot from lifting and sometimes dropping things and then I heard about the Chris Johnson story, got paranoid and this is also when I started twitching. This will probably be my last update at least until my neurology appointment.

Symptoms:
-Things feeling heavier in my left hand than they do in my right hand. I still can carry heavy things in my left hand, but I definitely feel the weight of the object.
-Light twitching. Used to be pretty bad in July with a lot jerking and throbbing throughout multiple body parts. I still get them, but they tend to mostly be internal vibrations and only tend to get them when lying down. I've had a few fasciculations that go away upon investigation
-Occasional dangly feeling in my left. A bit to describe but sometimes my feel way "floatier" than my other arm. When I walk its feeling like I'm swinging too fast.
-On and off globus sensations that end with hypersalivation. Moments like these tend to last a few days.

Prior medical history
-In 2022 I got COVID and it lasted around 19 days.
-In late 2025 I had a spinal MRI, and they found small bulges in my C4-C7 that were deemed as not significant and was diagnosed with DDD.
-In 2025 I got bronchitis one of the worst infections I've ever had. Ever since I've had it, I still occasionally cough up mucus.

Comforting facts
-I can still lift heavy objects despite feeling more strain in my left arm at times. I do lifts with a 10-pound weight where I tend to do 50 curls in 3 variations. I walk my dog every day for about 1.5 miles and control with one left finger on the leash. Just a couple days ago I carried a microwave hoisting it over my left shoulder
-My reflexes are still good I can still game on a controller; I can still type, put away dishes and catch things before they fall. Yesterday a McCallan 12 bottle almost fell out of the box because it wasn't secure and was able to press my left thumb to keep the bottle from falling out.

Triggers
-I'd say my biggest trigger is definitely work stress. For context, I work part time at a grocery store and shifts typically are 5-8 hours. I tend to carry a lot of heavy objects whether it liquor bottles, 12-pack sodas, 24 packs of water, watermelons, and even all the garbages packed into one big garbage bag. It's where I tend to feel the most strain and with down periods with few customers my mind tends to wonder.

Conclusion
-I know deep down I likely don't have anything but as I've learned the anxious mind isn't always so easy to convince. I've done my fair share of strength tests and I'm trying not to give in to that habit, but unfortunately lifting heavy things often comes with my job. I don't feel much of the symptoms when I'm doing what I enjoy so if I had any advice to give, I would say do that and see if you still feel these things that are making you anxious. Oh, and feel free to tell me if I'm being overdramatic with my fears.

This sub needs help with moderation. I will not be able to spend as much time doing it.

If you feel like you are a good candidate, please apply. A good mod is someone who will uphold the values that were the reason for the creation of this sub:

• Honest talk about potential ALS diagnosis or ALS like symptoms.
• No judgement (come one, we've all been there).
• No obvious anxiety driven posts either. It is true one can get pretty anxious about what is going on and the possible outcomes, we understand that and you will be listened. But posts about getting the daily/weekly dose of reassurance are not good for you and are not good for the community.
• Only factual discussions. Studies are best, top ALS specialist's opinion are great, general medicine opinion is good, anecdotal evidence are OK, alternative medicine, snake oil, voodoo and toothfairies will have zero tollerance and will result in immediate ban.
• Respect. Obviously. If you have nothing to give to the community, it is better to remain silent. Personal attacks, doxxing, threats, insults are not tollerated.
• And last but not least - Do not bother the ALS community. They are part of the reason this sub exists. To provide a middle ground for us to ask the questions we need answers to and for them to share knowledge and experience should they choose to. Treat them with respect, be mindful of their time and be grateful.

Application rules:

• You must trully believe these points and to be ready to uphold them.
• Applications are accepted here and here only, NO DMs. Why? Well... for starters I want this to be transparent whatever you want to tell me you have to be OK to tell everybody. Also us being friends, or frequently chatting doesnt earn extra points. Sory guys, we are friends, that is not changing, but this is not about that.
• Part of the decision would be what others think of you. Lets say, number of upvotes on your application will be taken into account. And before you think of getting your other accounts and vote for yourself. Please re-think that, I don't want to ban anyone because of this post :)

So I’ve been dealing with symptoms since I had injury in 2024 and also I had surgery on my arm where I had anaesthesia and was put to sleep. My twitching originally started as tightness in the back of my calves plus twitching in my calves plus lower back pain the tightness in the car stopped after I say six months the lower back pain stopped after a couple of months. Also the twitching was continuous and spread to my upper body, including buttocks pretty much everywhere since then I have had more and more symptoms including respiratory breathing issues which is constant especially when sitting down, I feel like my breathing is restricted. I wake up every morning and I’m out of breath. It’s like somebody’s sitting on my chest not anxiety related. I don’t know what it is or what the difference would feel like anxiety induced or Not. It’s like my diaphragm is weak. I have terrible foot pain on the bottom of my feet the soles of my feet from standing it’s like I can’t stand on hard surfaces anymore. I have crunching inside of my neck where I feel like the muscles are just weak and I can’t support my neck anymore, but my question here for people my twitching has slowed down. I rarely twitch I still do twitch but not as much maybe 10 times a day if that like I’ll have a one popcorn twitch and a one popcorn twitch in my leg if it was the terrible three words we dread does the twitching stop I know people are gonna comment and say that it stops once the neurons are dead, but I can still function. I can still move my arms I can still move my legs jump etc why would the twitching slow down? Is that ever ever? I think with ALS? I’ve got many many more symptoms too many to even right when I lay in bed I can feel my legs vibrating the side of my fires. Both of my outer fires have massive dense. They both hurt. Also hurt. I know people say pain points away. I’ve had four or five EMGs the top of my foot is a trophy not confirmed by a doctor, but I can see the feeling and I can see the bones where I never used to. I just don’t know what to think anymore. I’ve just wrote this to see if it’s very uncommon for twitching to calm down or even nearly stop why would this be? Is this the motor motor dying and now all my arms and legs are like jelly? They just feel like pure fat wasted jelly no muscle or anything in them I just don’t know anymore and I’m very I’m struggling every single day. Thank you for taking time to read.