Old 11-25-2014, 06:53 AM #31 (permalink)
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Default Re: ALS question for assessing my symptoms

I'm always baffled to read the wide variations in how this disease makes its march through our PALS' bodies. Some have sudden complete muscle failure that makes a limb unmoveable and others experience weakening first. Is it possible that in some all the muscles in a limb fail at the same time and in others muscles go at different rates, leaving some strength for a time? I'm not up enough on my anatomy to know if this is even possible--perhaps someone can chime in. There's so much we don't know--why in some would the muscle go all at once while in others it weakens first? I don't know how else to exlain the gradual weakening atrophy that some experience while still having some use of their limbs.

Unfortunately, every variation gives a DIHALS something to grasp on to if he or she is determined to convince us that ALS is the answer. It doesn't seem to help to mention how rare a presentation is, since those seeking a diagnosis seem bent on being so special that only the rarest disease will serve their purposes. I honestly hesitate to post publically on my husband's initial symptoms for fear of feeding those who comb the internet for just the description they seem to need...

sm-bs, I hope you see what a conundrum this is for us. We want to help but we don't want to feed fears inappropriately. I may have missed it, but I don't think the question you asked about about a normal emg early in progression was answered. I can only say that Ive seen posts where people were sent home and told return months later if symptoms continued to progress. Some take years to get a definitive diagnosis and others are slammed with it out of the blue. If you've combed this forum, you know that there is NO definitive answer. ALS is very rare, but it happens, and everyone seems to be different. In our case, all symptoms were written off until my husband started stumbling and falling when he should not have. That seems to be the gold standard. Everything else can have a myriad of other causes. If you've been told that you don't have ALS, please try to enjoy your days and nights. If your symptoms progress, return to your neuro. If you think it's ALS, find one that specializes in MND. Unfortunately, I don't think there's a shortcut to recognizing this monster. We just don't want to see people without ALS, who are the majority, waste their lives worrying about it. I am personally thankful that I didn't know anything about ALS when my husband's early symptoms started. It was bad enough knowing something was wrong--this knowledge would have robbed us of several wonderful, hopeful years.
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Old 11-25-2014, 08:49 AM #32 (permalink)
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Default Re: ALS question for assessing my symptoms

Nuts, you are so right about the rare presentations. In my case , I think my emotions are getting in the way logic and probability. I'm on my way to the neuro right now and I'm in a zombie state of mind. I plan to outline my symptoms later in a thread to see what people think. There are so many well educated and kind hearted people in these forums. I've been a lurker for a few months.
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Old 11-25-2014, 08:57 AM #33 (permalink)
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Default Re: ALS question for assessing my symptoms

I really think the failure of one muscle is the way it almost always starts. I think it is probably more incapacitating in the beginning if it is your hand than your leg. For example when my calf muscle went I could still walk ( it was not normal ) but the function of the calf muscle was completely gone. So you could say my leg is weak but it is weak because one part of my leg is completely nonfunctional
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Old 11-25-2014, 12:25 PM #34 (permalink)
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Default Re: ALS question for assessing my symptoms

First I would like to thank Atsugi for her kindness and patience.
Nutz, thank you very much for your post, I know you all are facing a tremendous difficulty with answering in DIHALS section.
My point is that some of the "NOT ALS" answers are based on stickies that may have extrapolated "gold standards" into unilateral rules.
Initial Clean EMG, Pain, widespread facics, sensory symptoms > I don't have seen any documents which confirm that these exclude ALS. If this assertion is not true, then it's false. perhaps it may not be used to rule out some condition?
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Old 11-25-2014, 12:37 PM #35 (permalink)
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Default Re: ALS question for assessing my symptoms

Nuts I don't think that ALS starts in people with a whole limb failing at all? That would be extremely rare. I think we have covered this well before.

Usually we are talking to people here about CLINICAL v PERCEIVED weakness.

Frenchfries you are welcome to go get advice from somewhere else. Those of us who are living or have lived ALS have earned the right to state what we learned.

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Old 11-25-2014, 03:16 PM #36 (permalink)
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Default Re: ALS question for assessing my symptoms

Tillie, I think I may have misspoke.....err...miswritten? I realize the entire limb doesn't fail at once, but that some people report no perception of weakness until they fall down while others stumble and struggle before the complete collapse. Perhaps I've misunderstood.

As the day wears on I'm feeling more blunt, so for those of you looking for a diagnosis, we do get tired of people trying to talk themselves into having ALS. These stickies are based on our experiences. If you don't like what you read, please don't stick around arguing with those of us living with this monster--contact an experience neuro and have that discussion on his time and your dime. Now it's time to get back to thee twisted humor section...
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Old 11-25-2014, 05:14 PM #37 (permalink)
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Default Re: ALS question for assessing my symptoms

nuts im with you on that. i see day out where their is a lot coming on here asking the same thing. for ones i would like see if there in to learning about als. all i do see is someone that wants us to hold there hand. it would be alright if they knew what it is all about i hope one day they will see that. i don't think they realize that. by what their doing they are making ones mad. it dose to me some time. i try not to post back to them. and then theirs ones that wants you to get mad that's what feeds them. they will hit sites like this to eat more and under all kinds of names. it's hard not to feed the fire and when they put this right up in to your face. it's even harder.. i know we don't want to look at any of this. well that's hard to keep from that when they start a thread and not know what it is all about till you read it.
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Old 11-25-2014, 05:22 PM #38 (permalink)
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Default Re: ALS question for assessing my symptoms

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Originally Posted by FrenchFries View Post
First I would like to thank Atsugi for her kindness and patience.
Nutz, thank you very much for your post, I know you all are facing a tremendous difficulty with answering in DIHALS section.
My point is that some of the "NOT ALS" answers are based on stickies that may have extrapolated "gold standards" into unilateral rules.
Initial Clean EMG, Pain, widespread facics, sensory symptoms > I don't have seen any documents which confirm that these exclude ALS. If this assertion is not true, then it's false. perhaps it may not be used to rule out some condition?
Atsugi is a male, and yes he is very helpful.....a valuable asset to this forum....just sayin.
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Old 11-25-2014, 05:36 PM #39 (permalink)
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Default Re: ALS question for assessing my symptoms

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Atsugi is a male, and yes he is very helpful.....a valuable asset to this forum....just sayin.
yes he is . hes been on the front lines.
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Old 11-25-2014, 07:00 PM #40 (permalink)
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Default Re: ALS question for assessing my symptoms

HA I did type a reply about what a lovely lady Atsugi is, then replaced with one about him being 'such a man' ... then I just didn't send any of it in ...

At least I'm giggling for the first time today
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Old 11-25-2014, 08:30 PM #41 (permalink)
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Default Re: ALS question for assessing my symptoms

I trully understand you are all tired of dealing with clumsy people like me. Maybe too greedy, keeping asking questions to understand when someone is helping us.

Sorry if I make someone mad, it was not the point at all.
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Old 11-25-2014, 09:07 PM #42 (permalink)
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Default Re: ALS question for assessing my symptoms

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, I think I may have misspoke.....err...miswritten? I realize the entire limb doesn't fail at once, but that some people report no perception of weakness until they fall down while others stumble and struggle before the complete collapse. Perhaps I've misunderstood.
Nuts it's hard in text isn't it?
What you describe now is very much how it normally is with ALS. There is no 'perceived' weakness. There is just the sudden falling down, stumbling or inability to do something, but they don't 'feel' weak.

When it is the legs they either fall or begin stumbling, or if in the hands they often suddenly can't do things, particularly fine motor.

When examined by a neurologist there is weakness detected.

Very different to those who come here saying I feel weak, I feel tired etc. and a neurologist cannot measure any weakness.

That's where the text bit gets hard - falling and stumbling are not the entire limb failing, so I get what you meant now

It is one of the sad reasons so many of our PALS do have so many falls - they don't feel weak, and they believe they can do things still.

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Old 11-26-2014, 02:37 PM #43 (permalink)
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Default Re: ALS question for assessing my symptoms

Chiming in, as requested. My partner has ftd( no diagnosis) and looks to have mnd (no investigations or diagnosis) Long story for another time.

I have noticed physical symptoms for under a year, and am watching very carefully to build up a picture. He is unaware of any behavioural or physical symptoms (typycal of ftd ) and reacts badly to direct questions.

I first noticed atrophy in his right hand, and have seen 'progressive' weakness - he cannot use a door key, car key, plug in chargers for phone etc, but has adapted his grip to use more fingers, or a fist, or his left hand. He still performs these tasks, but has unconsciously adapted his techniques. He cannot carry plates so balances them on his upturned wrists.

I have no medical training, but it looks as though one muscle stops working so the adjoining ones are used. If he were aware, he would be already describing it as weakness.

So maybe it's possible to lose the use of a muscle, seemingly abruptly, when in fact it has been more gradual, but needs a combination of different losses to add up to a complete failure.

Could this be right?
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Old 11-26-2014, 02:45 PM #44 (permalink)
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Default Re: ALS question for assessing my symptoms

Hilary, it's important to have a diagnosis. We can't do that here, as we're not doctors. There are several kinds of dementia and his possible MND might be something treatable, instead of ALS.
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Old 11-26-2014, 02:57 PM #45 (permalink)
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Default Re: ALS question for assessing my symptoms

not sure who requested you chime in Hilary, but a new thread probably would have been more appropriate as this thread has dissolved into our own private musings.

You need to work with doctors who do have medical training, rather than sit and observe for this long with no medical training.

All the best in solving your husbands issues with doctors.
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