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Author Topic: still not convinced it's not ALS...:(  (Read 289 times)

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Offline colls22

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still not convinced it's not ALS...:(
« on: February 23, 2013, 03:05:21 PM »
Well, I'm still beyond freaked out about my shoulder issues. I just cannot get out of my head that weakness can be anything OTHER than...you know. I even had an EMG on the arm/shoulder last week, and it came out clean, but that hasn't reassured me.

It's absolutely not possible to have a clean EMG and still have it, is it?

Anyone have any experience with rotator cuff issues? Though I feel discomfort, I don't feel like it hurts enough to be that, despite what I'm being told. Apparently, you can have either rotator cuff tendonitis, or even a small tear, and have minimal pain, but still have some strength loss.

Help! I'm really losing it here...
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Offline mustang65

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Re: still not convinced it's not ALS...:(
« Reply #1 on: February 23, 2013, 03:27:47 PM »
Colls, I have been having some shoulder/arm issues recently too, and I share your same dreaded fear.  From what I understand, an EMG will pick up...you know...way before you even notice any weakness.  So, if your weakness was due to that, then the EMG would have picked it up.

Also, in regard to the rotator cuff, my dad tore his rotator cuff a few years ago and was in severe pain from it.  My mom, on the other hand, has been complaining of pain for quite a few weeks (maybe even months) now, but, like you, didn't feel like it was bad enough to go to the doctor.  She finally decided to go and the doctor ordered an MRI, which showed a couple of small tears (related to the rotator cuff), plus a bit of bursitis in her shoulder.  All she has to do now is go to physical therapy a couple of times a week to regain strength. 

I think that something like this - completely benign - is much more likely what you are experiencing.  I see no reason to be worried about the other if your EMG was clean.   :happy0151:
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Offline colls22

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Re: still not convinced it's not ALS...:(
« Reply #2 on: February 23, 2013, 04:27:56 PM »
Thanks for the reassurance.

I was discussing the whole pain issue with my physical therapist, and he said that "pain" is such a tough term, since it can mean so many different things. For me, I associate it with...you know, actual, real pain, similar to what you describe with your dad. But, logically, aching, feeling "weird", or anything like that can also be pain symptoms, just less severe.

I haven't had a scan, so I have no idea if there are any tears or not. Obviously not a complete one. Apparently my strength difference is only about 20% between the arms. Still,

Yes, EMGs are incredibly sensitive. And also, I've read many places that with weakness, often times a person will not even know they have it, until it's pointed out on a clinical exam. My neurologist once said that not one of the people he's seen who come in actually worried about MND had it. I hope that's me too!
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Offline Mom21

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Re: still not convinced it's not ALS...:(
« Reply #3 on: February 23, 2013, 05:02:43 PM »
I don't know your whole story with your shoulder so this may be of no help.  But, I was having pain and weakness in my left shoulder for over a week.  It hurt whenever I lifted my arm or moved it in certain directions.  I had myself convinced it was lung cancer.  I was urged to see a chiropractor and went for the first time on Monday.  He said it was out of place probably from reaching up for something without realizing it and he adjusted me.  I also have some exercises to do.  It took a couple of days but now feels fine.  Something to consider anyway.
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Offline sixpack

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Re: still not convinced it's not ALS...:(
« Reply #4 on: February 24, 2013, 09:29:56 AM »
colls

you STILL  don't have ALS.  even though your arm hurts or feels weak or you think you do or you've convinced yourself that you do.    You will not get better having EMG after EMG.  You will not get better by ruminating or seeking continual reassurance.  You need to better manage your anxiety disorder
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MOST anxiety occurs on a subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state

Offline colls22

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Re: still not convinced it's not ALS...:(
« Reply #5 on: February 24, 2013, 03:34:59 PM »
SixPack - I think I'm driving you crazy :)

I don't know how I've gotten to this point. I really have convinced myself of ALS, despite whatever tests I've had, and whomever has evaluated me. Suddenly, the EMG on which I relied so heavily for reassurance in the past means nothing to me.
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Offline sixpack

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Re: still not convinced it's not ALS...:(
« Reply #6 on: February 24, 2013, 04:22:50 PM »
no you are not making me crazy.  you are making yourself crazy though  :yes:  what your continual worry and seeking of the useless reassurance does to me is make me rather sad for  you.  Sad that you just keep hitting yourself over the head with that same 2 by 4 and you aren't learning anything from it.

you know, colls, it IS NOT surprising that the emg that you are relying on isn't doing the job.  NO med test or any form of reassurance is going to make any difference in your thinking.  It doesn't help anybody for long.

you, whether you like it or not  :winking0008:, are going to have to start dealing with the disordered thinking that you have.  This is actually probably more difficult than dealing with an actual neuro disease in many respects because it has to come from you and not medical doctors.  An actual neuro disease, while some actually lead to death, still have SET treatments---- chemo or radiation or physical therapy or surgery or medications---that docs say-- Okay this is what I will do for you. The doc pretty much orders the treatment and then gives the treatment with only the patient having to show up to get it done.   Those good ole anxiety disorders--even with the BEST shrinks and best psychological medications--- still MUST have the person doing the hard work.  Taking a passive role in hopes that one gets better will NOT yield any positive results.

so you are going to have to decide if you like whacking your head over and over with the 2 by 4 and getting the same useless results  OR decide to amble on over to the toolbox and find some better tools to get you on the road to recovery.
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MOST anxiety occurs on a subconscious level.  JUST because you don't feel consciously anxious or had a day or two of calm doesn't mean your mind & body are relaxed.  It can take months of reduced anxiety before a body goes back to a more non-reactive state

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