Sensory symptoms

[nebrhahe53]

Everyone here is saying that ALS does not have sensory symptoms, but my left hand does have some numbness and occasional pain, so is it really true that all ALS sufferers should not have sensory symptoms?

 

[MaxEidswick]

Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


-----
Max - Monday, August 18, 2014 12:03:01 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

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[Nikki J]

Neil how compromised is your hand? Certainly pain happens secondary to the damage to the motor neurons. Numbness could also be secondary. Have you possibly strained it?

 

[nebrhahe53]

Max-why the sticky message for me-I've been on here a while and know the ropes.
My hand is wasted, the 4th and 5th fingers basically dont work anymore, thinks slip out of the other 3 if I try to hold them, and I have elbow and shoulder weakness on that side, so I would say fairly compromised-I cant lift up anything heavier than a cup of water and that really shakes when i do it.
I ask the question because I think a small number of PALS do have sensory symptoms as well-my sensory symptoms started before the weakness and my dirty EMG's

 

[tinyandme]

Haydens fingers went numb first, then weakness, then wasting..

 

[MaxEidswick]

>Max-why the sticky message for me-I've been on here a while and know the ropes.

sorry Neil, my bad ... trying to work on too many desktops at once with too few brains! :-( ... I was testing to new hotkey in another session via rdc and got mixed up.

>but my left hand does have some numbness and occasional pain,

maybe you should check with the medicos on the pain especially ...

again, sorry ...

 

[Schmidhogan]

Clearly there is pain and other stuff going on with ALS due mainly to strain, joint compression, and neuropathy (whatever that means). I often feel tingling in my feet, neuropathy I'm told, and am in constant discomfort with my atrophied left shoulder, compression I'm told. Alex

 

[Atsugi]

neuropathy (whatever that means)

Neuropathy is short for peripheral neuropathy, which simply means something is wrong with one of the peripheral (outside the brain) nervous systems. There are LOTS of neuropathies, especially for diabetics.


NEBRHAHE3: It's totally possible to have a funky numbness and tingling in your hand, maybe even pain. It's not a symptom that points to ALS, but it can happen to PALS, nonetheless. It could be totally unrelated, too. See what your doctor thinks about it. In the meantime, you could take some pain killers to take the edge off.