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Please let me know what your question is, I'd be happy to answer
my question is this - with limb onset ALS, I realize that the typical progression is distal (ie hands, feet) to proximal. how often does it happen the other way around? specifically, how often do you see a presentation that begins in one shoulder? i'm quite scared...
and by quite scared, I mean petrified :(
Could you please repeat what you typed earlier
It was cut off my by my chat window
Have you been diagnosed with limb onset ALS?
Are you concerned that you may have limb onset ALS?
Why is this?
left shoulder weakness
Have you had an MRI of the neck, EMG?
I've not had an mri. I have had a total of 6 emgs since sept 2011
the most recent was two weeks ago
I'd love to answer yor question
but I just want to clarify
you have NOT been dx with limb onsetALS
no, i'm just scared of it
I can elaborate a bit, if you would like
all of my emgs have been at my request, firstly.
what else would you like to know?
no, just emgs
Have you had an evaluation from a Neurologist?
what did he / she say?
that i'm fine
but, back to my original question. how often do you see initial presentation in one shoulder, for upper limb onset?
So there are no exact studies on how fast it will progress
typically lower limb will progress faster
than upper limb
okay, but how often does the presentation FIRST begin with a shoulder (proximal) versus hand/fingers (distal)?
its not common to be honest to present in upper limb
...and to begin in the shoulder of the upper limb?
when it does present in the upper
its mostly the hand
my only concern is weakness in the left (dominant) shoulder
Its not common for isolated shoulder weakness
I had an emg of that arm & shoulder two weeks ago.
with normal EMG
if there was something going on with that shoulder, would the emg have picked it up?
yes if it was neuropathic
EMG is pretty good
sorry, that's what I meant
at picking up stuff like that
The EMG would have shown something if it was ALS
I was told that I have a rotator cuff issue, but i'm still scared of als
but the EMG is normal
so I should rely on that?
as a neurologist I would
the values on the report were all zeros
I'm sorry I was just confused by your questio
since the EMG are normal
meaning, you were wondering why I would still be worried?
its like someone telling me they have a heart attack when the EKG is normla
i don't know...guess afraid that the emg was wrong, or the doctor saw some values that he simply did not report.
yes but 6 EMGs are normla?
but they weren't ALL in this shoulder.
but I mean the shoulder one was normal
honeslty I don't think this is ASL
*ALS with a normal EMG
I've had a total of three in the shoulder - dec 2011, march 2012, and the one from two weeks ago
the one from two weeks ago involved four needle insertions, from the lower arm to the top, and then the back of the shoulder.
when i asked the doctor if the emg would have picked something up, if something were there, he looked at me as though i was insane.
The EMG is normal, you chance of limb associated ALS is low
the doctor told me that if i were already experiencing symptoms, there is no way the emg wouldn't have picked it up. is that right?
the EMG is pretty good
at picking up stuff like this
does four needle insertions (instead of only one) make it even more reliable, or does it not matter?
well it depends what you're looking for
ALS is diagnosed based on history and exam
and also EMG
so if they looked at one muscle in teh shoulder and it was normal
then I assume they wouldn't want to waste time with the other muscles
he did anyway, just to be thorough
but he said that it really didn't matter where he put that needle in the arm. if there was anything going on anywhere, it would pick it up. correct?
you can appreciated, i'm quite worked up here
i'm having trouble believing the emg was correct, and that the shoulder weakness is from a rotator cuff issue.
I can sense it
do you have any other questions?
a little more, yes. sorry, i just don't want to have to come back on later.
so in your experience, the upper limb presentations you've seen have begun in the distal part of the limb?
but this is rare stuff
okay. i don't have any of that.
as well...to get an idea of how the weakness is...
of the hand?
from what I've been told, it's like you're telling your body part to move, and it just won't do what you want, despite feeling "normal" by other accounts. is that right?
thats the sense i get from patients also
my weakness is more that i can do whatever it is i'm wanting to do, it's just more difficult
is there anything else I can help you with?
what i understand is that with als, patients don't FEEL anything is off, they just don't understand why something ceases working.
thats correct - they want to move the limb, but it doesn't move
so you don't think i need another emg?
having not seen the official EMG report
i cant' answer that
but if your doctor said it was normal
i dont' know how another study would help
i saw the report - the values beside all of the columns were all zeroes
i don't see how another study would help
for fibs, fasciculations, positive waves, etc
should i try to calm down?
please PM if you have any questions. feedback is appreciated, we're only compensated for excellent feedback
great, thanks dr