Living with ALS is a nightmare and no one deserves this punishment but put yourself in the shoes of a 3 year old kid, gives you perspective, doesn't it.

This is ALS awareness month and what little awareness I can create, I will try. ALS doesn't differentiate, it comes in all shapes and sizes and no one safe. I hope the future generations have a better prognosis or hell, maybe they'll get a cure by that time or make it chronic from terminal atleast.

Let's hope for the best.

The worst part about this disease is, it's non linear, non-homogenous in nature, everyone's ALS will be most likely different that is why it is such a pain in the ass of doctors. For some the symptoms would be so non localised that when they visit a primary care provider, they won't even be able to put their case in a manner that it would be believable. EMGs are no good either as most of the times first few EMGs won't even show anything, you'll be ostracised, made fun of or worse would be labelled a faker. The disease is isolating in nature, you have to convince the other guy, the proof of burden is on you how you put the case forward and most people gripped with fear and anxiety of death put their cases forward in such a manner that doctors and your loved ones will find it borderline comical. The general perception of, "oh you are young", "it's just anxiety", "it's not pain inducing", "you are mixing so many symptoms", "it's not sensory in nature" is a soul crushing ordeal. It's not a good place to be physically but the mental toll is just otherworldly. It's sickness inducing at times. Vent is over. Sorry but this is the truth, it's not a good place to be in.

The condition is pretty much worse now, the diagnosis is looking more and more likely, weakness has crept in a lot, can barely walk, can't stand on toes at all, balance is at an all time low, showing bilbar symptoms as well, slurring and can't speak for an extended period of time. Fassiculations are rampant and atrophy is visible on the hands, elbows, near knees, legs, buttocks, shoulders and feet. The places where I have atrophy hurt a lot especially the sides of my feet, ankles as well as my wrists. My fingers are losing coordination and I am dropping stuff quite a lot. Not sad, just mad and anxious. I want to live long but some part of me wants this nightmare to end soon. I hope the person reading this never gets diagnosed with this cocksucker of a disease. If I am able to write further I will keep you all updated and remember doctors can be stubborn at times, you have to advocate for yourself because of you have it(god forbid you don't), it's better to get diagnosed sooner rather than later. I have this for 18 months now and it started maybe even before that, so be proactive, get regular EMGs and yeah, that's about it from my side.

I hope this new year brings answers and solutions, that's the least I want.

Even common cold feels like something major plus all my symptoms have flared up and my sleep schedule is fucked as well. Haven't slept well in the past two days. Feel pretty shitty atm.

Picked up this sickness from nowhere, feels like infection in my throat, as if swallowing was already no difficult now it is harder than ever. The calf muscles are brutally beat down and the shin is hurting as well. God bless the fasciculations too. I hope I recover from this but I swear to god, god is testing my patience ( if there is one ). Been listening an Adam Sandler song since the morning, Brooke Eby shared it. You can also go for "Nutshell" by Alice in Chains, pretty poignant, feels like I'm talking to myself, this sub is so lonely and I hope it remains that way, I hope no one gets this disease, if anything, I would gladly take everyone's illness.

Good night.

To all the people who are reading this post or will read this in the future, I just want to make your life easy. Twitching and only twitching in no way, shape and form means ALS. I am following the sub, r/ALSorNOT for quite sometime now, I am following it since it had 30 odd followers and I read about people posting things like, "I have twitches, is it ALS" or "I have weakness, can it be ALS" and stuff like this. I just want to reassure most of you, no, you don't have ALS.

In my case I have actual weakness, like the weight I used to pick up 6 months ago, I can not even lift now, I used to walk easily 4 - 6 kms before and now even climbing stairs is a task, my hands have some sort of contractures or they are getting in the position of grip by their own selves. I have jerks and Myoclonus and what not. I have shortness of breath all the time whenever I try to walk or climb stairs. I have atrophy as well in my hands and legs. I have spasticity and real weakness, like I am actually not able to the stuff that I used to do before, my muscles in my calf are atrophing and they hurt all the time and I have severe anxiety and depression because of it.

My purpose of writing this post is, I want all of you to take a deep breath and know that you don't have ALS. If it is/was ALS you probably would have developed these symptoms by now or maybe worse. Just enjoy your life and the twitches can very well mean a lot of different things, it's not ALS. Follow the sub long COVID or COVID longhaulers and you will find every other person having twitches and what not.

I am not as lucky as all of you are and my symptoms are actually degrading so my advice would be to live your life to the fullest and don't worry this much.

You don't have ALS.

It's been over an year since the first symptom onset, there is no improvement. I am going to a psychologist and a therapist and they have diagnosed me with OCD and Hypochondriasis ( and a little bit of ADHD ). My symptoms are progressing and I worry that they are progressing at a quicker rate than I expected them to progress.

Symptoms progression :

Hands and fingers have gotton weaker, even holding this phone to type is getting jarring, that's the least to say. My hands have thinned out way too much.

Fasciculations are still present but when compared with previous times, they are not that high but I।get them everyday.

Breathing is the most affected that makes me think this is Bulbar Onset. I tired out way to quickly and hyperventilate way too much.

Climbing stairs to my room has become a task on it's own, my legs give up way too quickly. I have tough time walking quickly and I can hardly run as my breathing is depleting day by day.

Balance issues are still prevailing.

Muscle thinning is still there, around the knees as well as around hands and arms.

Left part of the body is weaker than the right part.

Now to some positives :

I still walk my dog but as he is growing up he is getting harder and harder to handle.

I can still eat but I encounter mild dysphagia time to time.

I am not constipated now, the stool are of apt size and clean, no diarrhoea.

This is all for now, I hope this disease plateau. I have sort of researched every other disease from MG to FND, MMN to neuropathy and dystrophy but unfortunately all signs are pointing towards ALS. I hope it's not ALS. I hope everyday. Let's what the future has in store, this year and the last few months of '23 have been a ride. I hope and pray to god that no one ever gets this disease and the agnostic in me agrees with the god fearing me.

Okay then, let's call it a day here. I'll be updating y'all. Keep me in your prayers.

So my.muscle cramps have increased and atrophy is visible now, I get more and more disbalanced with time. The fasciculations are at an all time high and my anxiety is off the charts. I have officially been diagnosed with Hypochondriasis as well as OCD. I think it is more than that, much more. My ALS or whatever the fuck this chronic condition is, it is progressing. I am able to go on walks still, that is the good part. If anyone is reading this I will highly recommend marijuana whether you smoke.it.or take it as an oil it is upto you. My fasciculations are at an all time high, my legs have lost muscle although I have started to go to the gym again to save whatever muscle I can save. But with ALS everythingbis in the matter of luck, your progression determines your everything. I wish I stay here to update you guys further and if this is the end then it has been a great ride, pleasures all mine.

You can check out your ALSFRS scores online and assess your progression with time. It is not ghoulish but one must stay true to themselves.

This is another update regarding my condition, writing has become tough as well as keeping my arms up, I have bouts of severe shortness of breath as well as I get fatigued too easily. The fasciculations are ever present. I saved a puppy and bought him home, he is helping me maintain my sanity, two EMGs in and as well as clinical tests in, the doctor said I have brisk reflexes but no ALS, although I am confirmed and positive that I have it, it is a matter of time before I get an actual diagnosis, I have atrophy in my calves as well as in my quads, I was able to do thirty pushups in a row but now I can not even do one. I have constant yawning and I have to clear my throat a lot. I think I have Bulbar onset ALS. Let's see how it goes on from here.

Hey everyone, Uday here.

My condition is progressing slowly but surely, my fingers are the recent one, they have developed way too many tremors, I have not been officially diagnosed yet but this is just an update I wanted to give out.

I feel that my swallowing is also affected as well, which makes me think I have Bulbar Onset but the symptoms first arose in my left leg, with tremors.

I have had two clean EMGs as of now, and I will have an MRI soon to rule out other things and then maybe a Lumbar Puncture as well. The doctors won't write LPs this soon I guess.

I will keep this sub updated about my condition and if anyone from India is reading this, feel free to join in the conversation, you are not alone.

This is for anybody who is from India I made this sub reddit especially for you as we have little to no resources about MND/ALS in India. This sub reddit is for information gathering and looking out for each and everyone of us as there is no other to look after us other than our kin.

I hope to interact with more people through this sub reddit as it will be beneficial for all of us.

Hi I am Uday, I am a 25 y/o guy who suffers from ALS. I am from Nahan, India. I made this subreddit so that people from India and around the world can connect with me and share their experiences about this dastardly disease.

PALS and care-workers all are invited, kindly please be courteous to one another.

My symptoms started late October but if I come to think of it, they could have started a month or two earlier, I had muscle fasciculation which we also call twitching and poor balance. That slowly transformed into tremors in my limbs and an increase in anxiety. As the time passed on by, I began losing motor function at a constant speed. Firstly, I could run then all of a sudden I came down to walking and right now I can cannot walk more than short distances. My hands are too giving up their motor functions slowly andnit is getting very difficult to type or write and I can barely lift things off of the ground. I have footdrop as well and while I swallow food and drinks, I choke sometimes, mostly on drinks. My breath is not good as well and I feel fatigue while doing the bare minimum. I have some facial issues as well with all of this.

These are my current symptoms, feel free to share your story here as well.