Old 03-29-2010, 01:53 PM #31 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

Male - 32 - Holland - architect
Leave your friend alone? I just asked her a question. My god what is wrong about that?
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Old 03-29-2010, 01:59 PM #32 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

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Old 03-29-2010, 02:19 PM #33 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

whatsgoingon.

firstly irismarie has a als diagnosed.
personally i think al should ban you for your insulant remarks of fellow pals.

it is so simple to understand.
those who twitched for years before were just twitchers,twitching is common(my son twitches )..............theres nothing to read into that.

before any symptoms the disease process has already started............that is in any disease not just als........fact.

if you were to be diagnosed with als after a clean emg your initial clinical exam would show umn signs and you would certainly have umn symptoms.
many who come here with this clean emg question have a normal clinical exam..........that means no als.

my first real feeling of something wrong was severe muscle spasms and stiffness to the point of being totally unable to move my legs................yet in reality the pls had started maybe 6mths before.
only looking back did i realise the balance issues and clumsiness was a result of hyperreflexia.

so as i have said before its not just the emg.......its a whole clinical picture.

how was your clinical exam?
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Old 03-29-2010, 02:35 PM #34 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

Insulant remarks of fellow pals? I never insulted anyone. I just asked irismarie if she has been diagnosed because I read here posts and it wasn't clear to me. I found it weird why she asked to close the thread, maybe she had a reason.

My last clinical showed very brisk reflexes , fasiculations, Hoffmann-Trömner reflex, jaw reflex, increased muscle tone in arm
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Old 03-29-2010, 02:58 PM #35 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

I dont mean any disresepct , but you have alot of nerve. Again, I am going to ask you, Do you have any idea what these people are living through on a day to day basis. You are carrying on about this and that and some of our friends here cannot eat, sleep, dealing with depression, making decisions for life support, paralyzed and some can only speak with their eyes...........NOW, you tell me ! I dont understand anyway. If I had a emg and it was clean..............see ya ! BUT I am smart enough to understand as with anything there is a great possibility that the diagnosis may change. If it does, I will deal with it when the time comes...............why is it suddenly so important that we specify clean can lead to not clean? Like with any other disease, cancer for instance, I could have lung cancer and for now all looks clean, does that mean it wont spread, pray not, but it might and then again I will deal with it................I certainly do not want to miss one day of my life ! And yet again, THIS IS A SUPPORT GROUP ! Any and all medical information I ask my doctor ! And for a little heads up, I would leave Iris alone as she is one of the most beloved PALS in this Forum. EVERYONE is crazy about her ! Why becasue as bad as things get for her , she ALWAYS asks "How are you and can I help in any way""...............you see, you have it all wrong, that is what this Forum is truly all about . When in the deep dark night, when sadness and fear overcome me, I know there is someone here who will hold my hand in the dark and I dont care if they have a clean or dirty EMG !
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Old 03-29-2010, 03:03 PM #36 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

Cate, I will hold your hand anytime! hugs Kay Marie
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Old 03-29-2010, 03:04 PM #37 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

Right on Cate!
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Old 03-29-2010, 03:17 PM #38 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

I asked to close the thread because stress is really bad for people with ALS and a lot of people here are getting stressed and really upset.

No I have no official diagnosis yet, just the word of my general doctor. But I cannot walk or even stand, my arms and hands are very weak, I am kept awake by fasciculations all over my body, I cannot swallow liquids often without choking and coughing, my speech is slow and clumsy. I cannot hold my head up without difficulty. I am going into hospital next week and expect the official sentence to fall .
A year ago I seemed "normal". I would not normally list my complaints like this but have done so just so you have no more queries about me.

I really did not intend to come back here as it is too unsettling and I just wish I could have peace in my life, but seeing people defend me made me realise I had to speak up for myself.

Once again, I ask Al or whoever CAN, to get rid of these people who want to hurt instead of cherish. They cannot be welcome where love is the main end of our connection with each other
And thank you so much my dear friends for your kindness
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Old 03-29-2010, 03:19 PM #39 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

whatsgoingon.

when did these umn signs develop? when was your clinical exam that showed them?

just wondering as i looked up your posts and found you have been twitching 19mths and was diagnosed bfs.
obviously your clinical exam was ok then hence the bfs diagnosed?
you asked way back if your clinical exam would show anything...........then went on to say a clinical exam means nothing.

in mnd a clinical exam means so much,its the only way to detect umn disease also it helps to distiguish als from pma.

if indeed you do have clinical umn signs and been twitching for so long you are half way to being clear of als..........maybe your one of us "lucky" rare pls'ers.
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Old 03-29-2010, 03:36 PM #40 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

Since my name was mentioned at the start of the thread I want to explain my story in more detail.

I started having ALS symptoms in 2009 and was diagnosed in August of that year. But the year before, 2008, I had gone to the neurologist for a different problem. I was doing an intensive workout program called P90X which I bought through a TV informercial. Any insomniacs changing the channel in the middle of the night, you've probably seen it advertised. It's a good program but very hard on the body. It includes a yoga workout that has a bunch of positions including one where you lie on your back and swing your legs over your head until they touch the floor. Well I am very inflexible and my legs come no where close to the floor, and when I do this my back is stiff so I end up with all my weight on my neck. I think that was the cause of the problems.

My first symptom was shooting pain through my left shoulder. Shortly afterward, the tip of my left thumb started to go numb. At about this time I found that my left arm was weaker and could not do as many curls as my right arm. So I went to the neurologist, the first time I'd ever been to a neurologist. I had a lot of tests and in the end he diagnosed it as arthritis in my spine causing nerve compression. Specifically there were small bone spurs visible in what are called the foramena, the openings in your backbone where nerves exit. This was thought due to my hard workout and all the stress I was putting on my neck area. I was advised to quit the workout program, which I did. I switched to starting to train to run a marathon.

Now as part of this testing I did have an EMG in my left arm, which was clean. BUT THIS WAS NOT A CASE OF ALS SYMPTOMS WITH A CLEAN EMG. Pardon me for shouting. My symptoms in 2008 were not ALS. First, I had sensory issues in the form of my numb thumb and my shoulder pain (which was exacerbated if I tilted my head back). ALS does not cause numbness and nerve pain. Second, I had a "dirty" MRI which showed nerve compression in my spine that would account for the problems. In short this was a normal garden-variety case of nerve impingement. I changed my workout and got some PT, and it cleared up.

Now it is true, six months later as my marathon training peaked, I started having what turned out to be ALS symptoms. My first symptoms were bulbar, my voice became weak and slightly slurred. I was also really, really tired and had trouble recovering from my training workouts, but I still don't know if that was ALS or just because I suddenly decided to become a marathoner at age 53. But I got tested, had a dirty EMG, and then a couple of months later at UCLA they re-did the EMG and it was worse. So they gave me the diagnosis on the basis of the progression.

But at that time, and even still now 8 months after diagnosis, my left arm where i had the problems in 2008, is the least affected part of my body (well my breathing is still good too, knock on wood). So that is further evidence that what I had in 2008 was not a case of ALS with a clean EMG. It was nerve impingement.

I would assume that any of us with ALS, if you had gone back years before we had symptoms, would have had a clean EMG back then. But most of the time nobody would ever get one since there would be no reason. Once in a while you might have a case like mine where an EMG was given due to some other cause, and so it is not surprising that the EMG is clean since the ALS disease process hasn't gotten going yet.

That is different though from someone who does have symptoms they are afraid might be ALS, whether twitching or atrophy or weakness or whatever, and you get a clean EMG. In that case you can know that your symptoms are not due to ALS (at least, lower motor neuron ALS). Maybe something else is causing it and you can get helped. Or maybe it's just anxiety and your own fears are manifesting because you are worrying about them so much. But it is not ALS, at that time.

Nobody can guarantee that you won't get ALS next year, any more than they can guarantee that you won't be killed in a traffic accident tomorrow. All they can say is that at this time, ALS is not producing your symptoms. My story illustrates exactly this point. ALS was not producing my symptoms in my left arm in 2008. That was the diagnosis and I still think it was correct, even given all that has happened since then.
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Old 03-29-2010, 04:51 PM #41 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

Dear Irishmarie I definitely don't want to hurt you. I'm sorry if it sounded like that. But I hope you can understand that a lot of us here of symptoms that are part of ALS and things progress and we worry again and we read that doctors are often wrong.

to Caroline; I had a clean emg and clinical at the onset of my twitching. Another clinical in the meantime that still was ok and 2 weeks ago another clinical that showed aboved mentioned signs. Now they wanted to wait it out for 3 more months. I hope you understand why I ask all those questions. I got a BFS diagnose but now things are changing and I'm heading to ?

This will be my last post as I seem to harm people
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Old 03-29-2010, 05:17 PM #42 (permalink)
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Default Re: Dont wanna burst any bubbles but there were a few posts here, Clean Emg then dirt

Wow! Seems like a harmless thread to me. Questions & answers, We all can learn but with all the fighting, how can anyone possibly benefit?

The thread was going nicely until TrFogey jumped in (just MHO) .....Why? Why, cant people just stay away from a thread that they dont want to participate in?

Silverlining & whatsgoingon, for what its worth, KUDOS to you for bringing up a subject that most of the viewers WANTED but were so obviously afraid to ask.

I think Wright has set the issue straight, Thank goodness hes here. I'll take your advise, Wright. Clean EMG, No als & I'll run with that!

GL
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