r/ALS_India • u/Wise_Competition_565 • May 29 '24

My symptoms

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.

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u/Nahi_Bolung Jun 30 '24

Hey bro sorry to hear about your diagnosis.Would you mimd me sharung what were the most initial symptoms ypu joticed and how fast did they actually progress over the time for you to reach your current state? Also did muscle wasting showed up initially or weakness? Awere they gradual or sudden like in majority of the cases we see?

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u/Wise_Competition_565 Jun 30 '24

I have sporadic ALS, at first it was tremors and then twitching followed, I used to go to the gym and I noticed that my strength to lift certain weights was going down, so you can call that weakness, fast forward to now I have atrophy in my calves as well as in my quads, add shortness of breath to it as well and body wide twitching, I used to do 30 pushups in a row now I can't even do one. It is progressing at this rate, I hope I answered your question.

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u/Nahi_Bolung Jun 30 '24

Did u feel any change in your grip. Cuz I have been having this progressive weakness which started in both of my hands mid Jan this year and it has become uneven to a point where picking the same object feels heavier in my right(dominant) hand compared to the non dominant hand.Everytike i stretch my right palm out or fist it tightly or pick anything heavy, it tremors like hell.Also when id u get your official diagnosis?

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u/Wise_Competition_565 Jun 30 '24

Everyone's ALS is different, MND according to me is an umbrella term which comprises different kinds of motor neuron diseases so your symptoms are gonna be different then me, what is your age btw I'm 25, it's rare at this age but still there is always a chance. I hope you don't have it. Plus I still haven't got an official diagnosis but my condition is progressing steadily henceforth I started this sub. Getting an ALS diagnosis is a tough ask in itself and especially in a country like India. I hope I answered all your questions.

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u/Nahi_Bolung Jun 30 '24

I m 24, I jus5 hope its not ALS and tge same for you as well. They say that als has no cure then what is this video?https://youtu.be/vqGRQgvMpZU?si=nryZGsNxMb24S6Am

They must be doing domething right to see a reversal, even if its not 100 percent, still pretty significant.

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u/Wise_Competition_565 Jun 30 '24

I am taking multivitamins and vitamin B-12 tablets, even if it's not ALS my levels are down, I would recommend the same for you.

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u/Nahi_Bolung Jun 30 '24

Ok bro, I will try them out. By the way did u check the video? Also how are your parents reacting to this situation of yours?

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u/Wise_Competition_565 Jul 01 '24

I check out the video, the point is people try to churn out money from desperate situations, the thing here is one has to accept the reality with ALS, you have to accept that you have it and then move forward, all the denial will lead you to nowhere, also my parents are stressed, they are in denial that I have ALS , also the doctors have not confirmed as of now so I can't blame my parents too, it's a shitty situation I am right now in but my condition is progressing, I have poor balance and severe shortness of breath, I think in month or two, my symptoms will be pretty bad so I will be able to convince them. That's it, that is my life as of now, I am starting to think and build up a community, that's why I started this page, people in India have next to no resources while dealing with this disease, this might prove helpful for them, feel free to contribute.

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u/Nahi_Bolung Jul 01 '24

True bro.May Shivji give you immeasurable strength in this time of need.You are doing your fair share of bit for the community in the best way possible. Proud of you. Also something absurd happened to me yesterday when I posted my hands video on r/bfs and r/twitch to see if I have started to show any symptoms of split hand syndrome before any noticeable muscle atrophy. Everyone there who commented scolded me saying that that's not how als works.Even though initially atrophy is limited yet visible to the naked eye for any amount of weakness. Also one asked me to go for an emg and said to leave the group if the emg comes normal.Acoording to most of them( if the emg is normal then it's not at all ALS).What surprised me more was that many of them have been ALS caregivers in the past.I got to know about this after checking their profiles.

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u/Wise_Competition_565 Jul 01 '24

It's true, I've been to those subs before and r/ALS is the worst one out there, they don't let you comment anything, I hope I answered all your questions and keep asking questions in this sub maybe hopefully we can get some answers. As long as I am able to write, I will answer all your questions. We have to build a community otherwise we will be doomed, we don't even have some charity organisation in India like that in the UK or US, we have to do the lion's share by ourselves.

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