Is ALS painful?

Рет қаралды 11,601

Your ALS Guide

Күн бұрын

Пікірлер: 34

@Flouncymagoo22 Жыл бұрын

You were so kind to my husband who was diagnosed with familial ALS. Thank you ❤❤❤

@RAINYDAYS00505 2 жыл бұрын

Thank you for describing the pain, it frustrates me so much when people think, well at least ALS isn't painful. Wtf

@lanarey4944 Жыл бұрын

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@harryharrison483 3 жыл бұрын

I get the most painful cramps at least 20 times a day, it feels like I’ve been stabbed

@lanarey4944 Жыл бұрын

@phd2007 Жыл бұрын

AWESOME glasses and velvet sport coat.

@Samuel-co9wm 3 жыл бұрын

When the neck, thoracic, and lumbar area is weakening along with normal osteoporosis you will have a lot of pain way before diagnosis. All of these areas are supporting a body with a third of what it takes. When the foot becomes hollow and the ankle starts to loose muscle, walking on your feet or standing all day will mess your whole body up and cause pain. People don't just get ALS either they can have stenosis in the spine and coupled with muscle loss it can be severely painful! This can all occur before you even loose mobility.

@KennyGuyte Жыл бұрын

Could my thoracic outlet syndrome be a misdiagnosis? It’s unilateral now and numbness in both pinky fingers with occasional pain at the brachial plexus. My surgeon performed an venogram and confined compression. My concern is amplified due to abrupt twitching or fasciculation in both legs that increases at night.

@lanarey4944 Жыл бұрын

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@Lusa184 3 жыл бұрын

Exactly! My Mom got ALS since 2017. after long time no moving. Her muscle became atrophy. So if any wrong position she will cry from pain, I have no idea how to help her got out from this disease. She can not talk also long time ago. Hope there is medicine or treatment method good for ALS soon.

@lanarey4944 Жыл бұрын

@MM-mp2dw 3 жыл бұрын

Sir, I watched most of your clips here on KZbin. As someone who has been researching ALS patient stories and forum posts of those affected for a long time, I must say that quite a bit of what you say is not right, or inaccurate at least. Let me give two examples: Firstly, you seem to suggest that pain becomes a problem due to muscle weakness and is rarely an initial symptom of ALS. However, there are many patients reporting pain especially in the hip area, fingers, and neck caused by muscle tightness, prior to any muscle weakness. Secondly, you mentioned fasciculations are rarely serious and rarely a first ALS symptom. Well, perhaps it depends on how one defines fasciculations but a sudden onset of persistent fasciculations (we are not talking about the common odd twitches) can also be something to be worried about, especially for male over 50 years of age. It can also very well be the first ALS symptom that those affected notice. Moreover, while I appreciate you are being upbeat, unfortunately it is a fact that the patient’s reality of today has not changed one single bit. Apart from two very lousy drugs, the medical profession can offer nothing to slow, halt, or improve the course of this disease. Moreover, one my findings is that many patients who try to maintain hope by refusing a final diagnosis and stay away from the medical profession, fare better. Anyway, let's all not give up hope, we have no alternative!

@gloriarader2987 3 жыл бұрын

What's sad is that like cancer all the $$$$$$$ that has been donated you know they have cures. I would hate to be the money mongrels on judgement day! This is just my opinion

@hubertk.1662 3 жыл бұрын

@@gloriarader2987 Man stop beeing a conspiracy theorist. You talk bullshit.

@skrivenoznanjeumjetnost826 2 жыл бұрын

so when the symptoms starts,how much it takes for one to actually be almost paralised or to lose speach,to go pretty weak,is it weeks or months or ..years?

@jmeeks76 2 жыл бұрын

You are so incorrect about a correlation of BFS and ALS. BFS is all well known in the Health Anxiety area of profession. It is NOT rare at all! No Bfs does not turn into als, in any textbook. Working in a neuro clinic you will learn that bfs is extremely common and has never turned into als. Get your story straight, before you throw people into panic! Also, it is all well documented that persistent widespread twitches are due to common things, such as; Alcohol, Dehydration, Diphenhydramine, Caffeine, B6 toxicity. So again, learn before you start a problem.

@MM-mp2dw 2 жыл бұрын

@@jmeeks76 Many thanks for your feedback. Please be assured that I had no intentions to "throw people into panic". Probably as most of us, I am on this website for (rather unpleasant) reasons too. I was not talking about BFS "turning into" ALS, though as I can see that it could have been read that way, I have removed that line from my comment. My intentions were more aimed at the medical profession to acknowledege that sudden onset, strong and persistent fasciculations (24/7, or nearly) have been reported as a first symptom of ALS, especially in patients over 50 years of age.