Specific questions and curiosity

[Alvie22]

Hello, I read the sticky and I just have some questions about certain things I'm curious about. I'm asking not only for myself but for knowledge. I noticed that it's mentioned ALS is about complete failure of a muscle. Does that mean that once an area gets hit it just completely stops working? For example, if the foot was affected, and one tried to stand on their toes, would they feel the weakness and gradually be unable to do it or just completely unable to do it? I just need clarification on that. Also, before complete disfunction of a muscle, would moving that muscle for too long or using it cause fatigue at all? Would muscles tremble from the lack of strength? how does ALS affect the joints before complete degradation of the muscle? I'm sorry if some of these questions were already answered and I'm seeming ignorant by asking them again. I'm curious about ALS because it's similar to prion disease and ever since I've learned about those I've made it my goal to cure them, and I think ALS is similar since they are caused by protein mutations. Sorry if these questions make anyone uncomfortable, I'm just a curious person wanting to know more about this disease considering it's one of the protein mutation disease we know more about. ALS is a horrifying disease, and I hope in the very near future, a cure is found.

 

[Nikki J]

I think the confusion arises because although an individual muscle fails suddenly ( remember the wifi signal analogy in the sticky?) some movements use several muscles so you may be able to do something but it is difficult

The walking on the toes thing though happened with no warning at all. I was not/ am not in the habit of self testing but when I inadvertently discovered it I was completely surprised. In addition when it happens it is very weird. You feel as if you are not trying with your leg even though your brain is trying very hard. Nothing happens and you don't feel strain in your leg.

It is hard to convey this in words and I was surprised by it. When I described it to my sister who had already gone through it she just said yep that is how it is.

 

[Alvie22]

Oh I see, so there's no strain in doing the movement, it just doesn't happen then? At that point is there a clear sign of atrophy in the muscle? Is the atrophy obvious or does that depend on rhe muscle it affects?

 

[Nikki J]

Yes to the first My atrophy came considerably after the muscle failure. I am very slow progressing. Yes different muscles show more. Plus it is more visible or less depending on physique

 

[Alvie22]

Oh I see.. I've seen some people say that they feel muscle cramps, does that happen at onset of symptoms or some time after?

 

[Alvie22]

Well, I asked these questions for the knowledge but also for personal reasons, but I hate to think such negative things like having a rare deadly disease at 22. I don't want to be a burden to anyone much less a bother, but here is my situation. For about 4 months, some interesting things have been happening to me. At first it began with sleeping problems, I also noticed some twitching on my forearm and trembling of my fingers, I simply attributed that to my poor sleep. Fast forward to August, my sleep is better, I get my usual 7-8 per night, but my muscles seem to not get better. Whenever I tried to do anything requiring strength, my arms and legs trembled. Currently, my arms still tremble, they feel weak, but no clinical weakness according to my doc who did all the strength tests, although they "feel" weak, my hands are also cramping, my body still twitches, my body feels fatigued. If I use any muscles for too long they start to fatigue/cramp and that includes my tongue when I eat and even my face when I smile or make facial gestures for too long. I don't know what atrophy would look like so I have no idea if that is occurring. I notice many muscles feel stiff, those in my forearm and my feet and legs. My doctor doesn't know what's wrong and did all the tests, he could think of and they were normal. I have a neurology appointment but with a sleep specialist. I figured I would ask people with experience who know more about this than me, just to get an opinion. I thank you Nikki for answering my questions despite their possible intruding nature. Thanks for any other replies.

 

[affected]

There is a post at the top of this forum section titled READ BEFORE POSTING.

Please do so, it's clear and is our official position.

I did not read most of your last post as it's all just a big lump of text. Please use paragraphs.

Many of our PALS are using eyegaze technology as they can't use their hands. It would really help them if you make it easy for them to read your posts.

All of our CALS are exhausted and stressed, so again help them if you want your posts read.

I'm sure the sticky will answer your questions anyway. Remember you are asking people with the worst terminal disease to stop and take some of their precious remaining time to answer you.

 

[GregK]

>. I don't know what atrophy would look like

Let me help: think Auschwitz prisoner.

 

[affected]

Ditto what Greg said.

For those who go on about oh I think I have atrophy, we know they don't because we know that atrophy is like OMG where did it go? There just isn't any question about it.

 

[Alvie22]

Okay will do. Thanks for the replies, and sorry for being inconsiderate, i will read the sticky again and fix up my mess afterward.

 

[Alvie22]

Well, I asked these questions for the knowledge but also for personal reasons, but I hate to think such negative things like having a rare deadly disease at 22. I don't want to be a burden to anyone much less a bother, but here is my situation. For about 4 months, some interesting things have been happening to me. At first it began with sleeping problems, I also noticed some twitching on my forearm and trembling of my fingers, I simply attributed that to my poor sleep. Fast forward to August, my sleep is better, I get my usual 7-8 per night, but my muscles seem to not get better. Whenever I tried to do anything requiring strength, my arms and legs trembled. Currently, my arms still tremble, they feel weak, but no clinical weakness according to my doc who did all the strength tests, although they "feel" weak, my hands are also cramping, my body still twitches, my body feels fatigued. If I use any muscles for too long they start to fatigue/cramp and that includes my tongue when I eat and even my face when I smile or make facial gestures for too long. I don't know what atrophy would look like so I have no idea if that is occurring. I notice many muscles feel stiff, those in my forearm and my feet and legs. My doctor doesn't know what's wrong and did all the tests, he could think of and they were normal. I have a neurology appointment but with a sleep specialist. I figured I would ask people with experience who know more about this than me, just to get an opinion. I thank you Nikki for answering my questions despite their possible intruding nature. Thanks for any other replies.

Okay, I will attempt to clarify what I was previously trying to say. I'd like to thank anyone who takes some of their precious time to answer and appreciate all responses.

For the past few months I've been having some problems. At the beginning I noticed I had twitches on my forearm on my left arm, as well as trembling of my thumbs. I attributed that to sleep but even after my sleep improved, these symptoms didn't.

Fast forward to now, I went to my doctor, he ordered every test he could think of and they all came back normal except for one, my AST levels. They were high. Its an enzyme that gets released by the liver, I think it indicates liver damage or muscle damages. Hence my worry.

My doctor said he wants to do another blood test to make sure it wasn't falsely elevated. So I'm going back Friday.

Currently, my hands are cramping and my muscles feel tense and stiff. My muscles tremble with any weight and my fingers feel clumsy. There isn't anything I can't do, that I've noticed yet anyway. My tongue also feels strained, when I chew for too long it quickly fatigues and that goes for most muscles in my body.

I just hope this isn't anything too serious, and I'm wondering if anyone has advice? I have a neurologist appointment but that's until December.

Thanks again to anyone who takes time to reply, you are very greatly appreciated.

 

[affected]

I've got two pieces of advice.

Firstly read the sticky post titled READ BEFORE POSTING.
It tells you clearly you won't feel all that stuff, you will simply fail to be able to do things. That's our official position, that's how ALS is.

Secondly, work with your doctors and let them order the tests and do the work. Trying to figure it out using the internet is just not good for you. You don't have the medical knowledge to differentiate what is solid information and what all the medical terms really mean.

ALS has no cure or treatment, so diagnosing early isn't any advantage. While you have no real symptoms of ALS, get on with life! You could consider volunteering with people who have real disabilities as that often helps people with mild symptoms that mean little to get some great perspective and appreciation of what they do have. All the best.

Lastly, please realise that our PALS using their eyes on a computer have a really hard time with big blocks of text, so quoting all that back in a new post only makes it more difficult for them.

 

[Alvie22]

thanks for your response I really appreciate it. I'm sorry I didn't mean to quote all of that in i guess I did it accidentally. Thanks for your input and for your advice!