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ldela

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I found an article on aboutbfs.com that appeared in the Annals of Internal Medicine in 1996 buy a doctor who started having fasciculations and feared he had ALS. In the article he cites a statement from the 1989 edition of Adams and Victor's Principles of Neurology.

It reads "A simple clinical rule is that fasciculations in relaxed muscle are never indicative of motor system disease unless there is an associated weakness, atrophy or reflex change."

I know there's a lot of dispute in these forums about whether such rules hold true. Does anyone know of a person who had fascics in relaxed muscle and NO weakness, atrophy of reflex change who ended up diagnosed with ALS?
 

ltr

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I know PALS on here who had fasciculations and no weakness or atrophy. Mike was one. He went for a back massage and started with fascics. Al said he had fasciculations in his calves, but his hands felt weak.

I started with weak legs before the fascics, but a lot has changed in 11 years since that article was written. I think the disease has a different story. Leslie
 

boxer22

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annmarie said:
I have read that article, sometimes I think I have read every article. I do not think anyone has ever been diagnosed. with als without weakness, reflex issues or atrophy, if you do not have these things and your muscles are just twitching with a cleam emg then you will not be diagnosed. I know when I read the article it was before I had weakness and atrophy so I thought ok I am in the clear, well now a couple of months later and I have very brisk reflexes, what definitely looks like atrophy, and what I perceive as weakness, so my emg picture may have changed, now I have to worry.. Annmarie

Hey annmarie,
Do you mind if i ask what your atrophy looks like and where it is? I to thought i had atrophy in the front of my calfs above my foot it looks like a dent when i bend, but if i dont bend its not there. I showed my nero and he said it was normal in that spot and it did not matter if the other didnt exactly match, so i guess what i thought was atrophy wasnt? Also it might be all in my head but i also think i am having wasting in between my thumb and finger ever since someone said thats the first muscle to go in als. My doctor said that was not true. So as you know i have no idea what to look for as far as atrophy. Also did you have an emg? If so was it normal. I have mine tomorrow and will let everyone know how it turns out.
ASHLEY
 

ldela

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Strength

I know that infectious diseases mutate in order to resist antibiotics, but I've never heard of a non-infectious one changing for no apparent reason - but I guess anything's possible.

I tested my strength today. I only exercise occasionally and was able to walk up/down 11 flights of stairs, do 20 pushups and 20 squats and walk around on my toes and heels for minutes at a time with no problem. I even tested by opening a jar.

I checked for any sign of atrophy and don't see any.

In light of that, I hope that this 'rule' holds true in my case.
 

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Idela - I think it is the unknown cause of als that is causing it to evolve and change. I don't care what the research says, this disease is not as rare as the stats say it is, especially the young people stats. I really wish they would take into account the PALS in the stats who didn't live very long and count them in also. Also, I think your strength test is great news. Sometimes I am strong enough to perform certain exercises, then I go through a period where I can hardly stand.

Ashley - Al posted some pictures of the atrophy in his hands. Use the search button at the top to look for them. I also found some when I either used google or yahoo, can't remember which. They are some help. I agree with Annmarie that you definitely would have weakness if you had atrophy. Try to keep smiling! Leslie
 

Jamiet

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I've done a ton of rearch and read the BFS article and also read the "BFS In A Nutshell" posting....

My opinion...there are exceptions to both, making them both ...."inaccurate". LTR, you hit the nail on the head, this is changing, hitting younger people...It's casued by something attacking motor neurons....and...well....we' don't know alot about the brain, which is why noone can figure out this darn disease.

This brings me to my next point..since we know so little about the brain...except what parts do what and when it bleeds and swells...otherwise...that's about it, we know little about what to do when it goes south...hence...we know little about the course it takes south.....there are several courses. All the interestates look the same, but there are diffferent routes.....I.E.....increased reflexes are standard, weakness and atrophy, but it's not a to rule in or out, only a diag. tool of which route were headed down.

So, in a nutshell, i would say....you can have ALS with only one symptom..say...twitches..but...if, in a reasonable period of time (i've heard 3 months, give it 5)....you don't have any of the other symptoms....your more than likely benign. I haven't spoken to anyone that has twitched more than 5 months and didn't show other signs. This is supported by the Mayo Clinic research into twitchers who twitchhed for more than two years with no other symptoms....NONE of them develolped ALS.

ALS is progressive, fast and destructive...if you have it and the sypmtoms of it (ALS), trust me...you will know something is not right. You will feel like crap, have horrible muscle issues and well...be 1/2 way crippled (sorry to be so blunt) in some way shape or form in a few months. Oh YEH, and i've chatted with one PAL....it all started in his shoudler....lost his shoulder muscle..took 3 years to diag, 15 doctors......you know what the signs were for the first year.....LOSS of STAMINA........He taught me one thing.....Loss of STAMINA is in a nutshell....WEAKNESS.....yes...that freaked me out becuase, i've lost stamina..

Can you hold your phone for long without your hand cramping....can you lift the same weight 20 times like you used to or is it now only 10, but still the same weigh.....2 + 2 = 4......so if you can lift 10 lbs 20 times two months ago and 10 lbs only 5 times now....that's 2 + 1.....= well 3.....


So, if you've been twitching for a while..and your not loosing muscles (YOU WOULD NOTICE) and / or you don't have weakness...your about 99.9999999% clear and congrats to you.

Now that i've scared 1/2 of you and made the other 1/2 feelmuch better, i've gotta get back to work here....best to all.

Good luck to all

rgds,

Jamie
 

Lorie

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My brother Timothy had symptoms for seven years before they suspected ALS three years ago. Diagnosed two years and three months ago. Up until last June he could function normally, then suddenly he lost the use of his arms and hands, his neck droops. So he went over two years before drastic changes occured. Before, he had twitches and cramps, maybe not all symptoms at one time. But done everything. Every case has its own journey. His sounds slow moving. I hope it is.


Lorie
 

Jamiet

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Annmarie...Annmarie....

Were in the red corner...i'm boxing our way out...we'll BEAT this! I said WE...not me, not you...not Leslie...WE.........I love all of yall...you all are my best friends right now. We have to stick together on this. We will figure out how to fix this and get over it. .....

C yall tomorrow....bedtime here...

rgds,

jamie
 

Jamiet

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Annmarie...I got exactly the same...my shoes dont fit. It used to be right, now it's both.

My hands are shrinking, fingers twisting, bicepts decreasing in size and my pectorl is 1/2 size of the other. Weakness still not there for me....but lost stamina is.

c you tomorrow...

Your friend in all this mess with you.

Jamie

Your friend fixing to get us out of all of this mess ...

Jamie


annmarie said:
Jamie,
you need to work in research, you have more info then any neuro around, thank you for your insightful and helpful post. I could not agree more with you, I unfortunately am a twitcher who is atrophied for sure, I can not wear the same size shoe on my left foot now, it is so much smaller and it was the early twitcher, it is weak and heavy, it is progressing so I seem to be heading the wrong direction, I again appreciate your info, so glad you are in our corner.. Annmarie
 
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