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stargrave

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Hello everybody.

There are a lot of question marks regarding ALS and MND in general, because there are a lot of conditions both related and not, that mimic one or more of the ALS symptoms and presentations.

Most people that are not PALS, like me, drop here and into many other forums searching for answers that sometimes docs don't have or don't want to give.

I have to say that this is one of the best sites, not only because PALS are running the show, sharing their knowledge from their own private battlefield, but because the professionalism showed, that I wish that at least 50% of the doctors I've visited should have.

Being said this, here is my question.

It's often said that ALS, curses with no pain, that it doesn't have a sudden onset, and that it doesn't have recovery and remission periods, meaning that once it starts, unfortunately, there's no way back.

From extensive reading in cases, reports, and even some answers in here I've learned that, even if this stands true, there are many cases were is the opposite, even in the great storieas of hope where a miracle happens(one that I wish for every PAL in the world).

So amongst all that stuff I've read that ALS has a "focalized" rather than a "widespread" presentation, like BFS, just to name a "widespread" symptom's presentation syndrome.

The question heer is: Is this true?

Because even for a definitive diagnose, you got to have damage or affectation in different spots, to confirm that both lower and upper neurons are affected.

Then again I've read extensively that, in the case of Twitching, benign twitching usually shows up in a widespread presentation, and ALS twitching is more focalized.

I've read that the definitive symptoms is weakness, and then everything else, so back to the questions.

Does ALS symptoms affected you in a focalized or a widespread way?

Do you have, for example, a weak leg, and you don't have many symptoms elsewhere until this limb becomes really affected(weak)? or You might have this as your primarily affected leg, but you also experience symptoms in different places of your body

Thanks and great days for everyone.
 
ALS is focal and affects one region at a time. Some docs hold to the fact it moves clockwise around the body but I do not subscribe to this theory from experience with the disease. Twitching is non-diagnostic of ALS. Everyone twitches at one point or another in their lifetime. Sometimes a person will take a long time for a definitive diagnosis because there are specific criteria neuros follow in the diagnosis of ALS. As an example a person might go to the neuro due to weakness or footdrop, only one region will be found to have dennervation and chronic rennervation and all other limbs and regions may not be involved and no symtpoms felt so the doctor will slap a Possible ALS on it with a request for followup later.

All the questions you are asking are good questions and all are answered in our search engine more in depth than I have the energy to go into.

Are you asking for research purposes or are you another newby coming in?
 
I think your question about weakness is important. Time and time again Pals and Pls sufferers mention their FIRST symptom as weakness. Weakness I believe is often the diagnostic key. Clinical weakness does of course not mean that you have ALs. It could be hundreds of neurological problems. But thats mostly how ALS starts.

Many people searching on this website, start with twitches and percieved weakness..... heavy limbs etc. If you ask people with MND they will almost always say, they felt weak, before anything else.
My first symptom was difficulty walking up slopes and stairs. Nothing else. I had a friend with ALs who started with a weak thumb that just stopped working! Nothing else.

I am happy for Pals to tell me I am wrong, it just so often seem to be the starting point of it all.
 
I am happy for Pals to tell me I am wrong, it just so often seem to be the starting point of it all.

You're right, but you'll never convince the typical person that posts in this part of the board that weakness is the initial symptom. Most of them think that a handful of unverified and unverifiable stories from untrained observers which contain obvious internal contradictions are scientifically equivalent to thousands of case histories compiled by highly qualified medical professionals. The more you point them to accurate information, the louder they protest that they are an exception and the harder they dig in their heels.

Makes it easy to tell the ones that are a waste of time and energy to give more than a perfunctory response to.

To the original poster in this thread: the plural form of the word "anecdote" is not "data." In the case of the accounts of widespread initial ALS onset in the body that you mention, "fairy tale collection" is probably both appropriate and accurate.
 
Trfogey. I do love your response. Maybe instead of protracted responses to inquiring minds. We just need to collectively stress the weakness issue. Although I know many have tried hard to do this, and try and help peoples anxiety. Maybe we reply in a too "long winded manner". Just keep stressing the weakness issue instead.

To the original "thread maker"
It is not a belief of all Neurologists that Benign fasciculation Syndrome actually exists.
Benign fasciculations, rather, just being a normal physiological state for some people, at certain times in their life.
They are harmless, so why a syndrome has been created to cover their existance , I do not fully understand.
I really quite enjoy them!

Aly
 
The reason why BF got a syndrome tacked on to it was because what ever causes the process of it, which is up for much debate, but over half of the BFSers have sensory issues in a wide spread fashion along with the twitches. So a collection of symptoms gets labled a syndrome when no actual damage is occuring, such as Benign Fasciculation Syndrome.

You are rite Aly, a lot of neuros dont acknowledge it because the jury is still out on what actually causes it and/or what it actually is. Some think it stems from untreated anxiety causing an over taxed nervous system, some believe a virus gets in and causes the nervous system to become hyper-excited, some believe its auto-immune related. Who knows, but it has a lot of symptoms that are very much there and have a way of making BFSers truly believe they may have something truly damaging occurring. Which is why, I believe, you guys have so many frequent flyers so to speak, and thats got a lot to do with why they have a hard time hearing what you are saying, because they really are feeling these symptoms and really have know idea where they are coming from. The sensory symptoms make them think they may have MS, and the twitches and perceived weakness make them think they may have ALS, so they really do find themselves trying to make a lot of square symptoms fit into a round hole.

Just my 2 cents
Take Care

Robynn:D
 
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That was an awesome explanation, Robyn. Best I have heard. Thanks heaps.
I think that there are many many more neurological conditions that will have a cause come to light in the future. I read a paper yesterday about a hereditary motor neuropathy that has just recently been recognized, which mimics PLS.

The discoveries being made and yet to be made are limitless. When I listen to my husband talk, I realize just how hard it is for a neurologist to piece together a bunch of symptoms , that do not fit any known " box". They can only watch, wait and reassure.

On the topic.... No clinical weakness=no ALS
ALS starts focally
Fasciculations widespread = no ALS
ALS tends to get progressively faster as time goes by.
Most fasciculations are not felt.
If the twitch is powerful enough to move a ? Finger ? Toe. Then it is not a fasciculation.
Recent research has shown that a percentage of ALS sufferers DO have sensory issues.
pals can of course have more than one area affected, it does not mean that the first area affected is totally destroyed of motor neurons before it starts on the next part.

Hope that answered the question and a bit more thrown in.

Kind regards Aly
 
I just became a fan of this thread. Hilarious square in a round hole comment Robynn. And Trfogey always a pleasure to read your responses. Absolutely hilarious but so true :)
 
New here, how do I post?
 
Alyoop
..........you just mentioned that pals DO have sensory issues ((such as tingling and pain)) when on another forum a couple of people have said that there are NO sensory issues with ALS
 
naynay, dont read too much into what Aly said, she said a percentage have sensory issues. From everything I've read and from everything thing Aly has told me (which she has done a lot of research) its a very small percentage that have sensory issues.

Aly, you may want to edit that one:)
 
oohh ok i get ya...and i just sent you a request on facebook :razz:
 
I think I understand your focalized vs widespread question, with MND requiring 3 areas of involvement for a definitive diagnosis.

MND onsets focally the vast majority of the time - so weakness/atrophy/spasticity in one place/limb. But you can't be diagnosed upon onset, because motor neurons, both upper and lower, can be damaged by lots of different things... anything from traumatic injuries to basic structural problems, as well as neurological diseases. Having those problems in one place puts them on the alert, though, and they search for a cause.

Over time, as the symptoms move on to new areas, and treatable causes are ruled out, a diagnosis of MND emerges. Pinched nerves, frozen shoulder syndrome, lesions, atraumatic SCI, those sorts of things stay in one place because their cause isn't moving around. MNDs are caused by a poorly understood underlying disease process, and so they are bound to cause more widespread damage over the years.

In the end, it isn't the motor neuron damage that sets MNDs apart... it is the continuous PROCESS of motor neuron damage. Thus, you can't know until the process has time to do its thing or not.

Most of the time, that process stays in the motor neurons. In fact, if a particular strain of motor neuron destroying disease strays too often, it doesn't end up in the "MND" umbrella. For instance, Hereditary Spastic Paraplegia is primarily a disease of the upper motor neurons leading to the legs, bowel/bladder, and sometimes hands. The UMND damage to the leg levels of the spine is its defining symptom, but it also commonly causes damage to other parts of our neurology - depending on what strain you have, optic nerves, cerebellum, front temporal lobe, eventual peripheral neuropathy, etc. It causes this "collateral damage" so regularly it isn't considered a true motor neuron disease. True MNDs can do stray damage also, but by definition it is rare.

This is why one-off stories told by unreliable narrators (non medical professionals who don't use precise terminology and have a tendency to connect symptoms that may be unrelated) is a really bad way to learn about MND. For one thing, people with neurological disorders are just as likely to have some level of neuro symptoms from the anxiety and stress of the disease. We don't have a crystal ball to tell those from organic symptoms, and that is why we leave it to doctors with statistically accurate sample sizes.
 
Dang Becky, you are good, LOL.

Your brain holds sooooo much information, LOL You never seize to amaze me:grin:
 
Nay nay, I am talking about people with ALS having sensory issues. These people have all the diagnostic criteria. Remember what I said about clinical weakness, being the key along with the very strict criteria for diagnosing all the mnd's.
You can't read this stuff out of context. You don't have the symptoms and signs of ALS so you don't need to worry one bit.
I knew the sensory comment might cause a stir, but I have felt awful about ignoring the fact. But.... There are just so many people posting about their symptoms that have nothing to do withALS, don't listen to the facts, and have major anxiety issues, that it was not prudent to do so.
I have read many well documented papers on it, and it exists but ALONG with the diagnosis of ALS.(as I said above).
The process is thought to be connected to the Degenerating process of ALS and not as a separate entity. This is not to say, that in some PALS that a separate process is not causing sensory issues, ie pressure neuropathies etc

It's an interesting area of research. I would hate to think that some people with signs and symptoms of ALS ( don't forget the Weakness), are reading this forum and blowing off their symptoms when they should be getting a neurological review, just because we have been forced to continually say, no sensory issues in ALS, just to allay the fears of the worried well.

Aly
 
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