Just saying hey...

[mtbcoach]

Hey - found the forum a couple days ago and have been reading through the stickies and various threads.

So glad to see there is a forum for those with ALS, very happy to see people connecting at various stages.

I'm very thankful of all the informations, well informed posts and insight of those living with ALS and their caregivers. What a brave group of people I've found here.

I'm hoping the path that has brought me here is one that answers questions while excluding a path that takes me down one so many of you are on. My GP has opened the door, referring me for my first EMG next month.

Thanks to all of those who share their personal stories, those who offer support as well as those who slap us back into reality when necessary...

 

[MaxEidswick]

looks like dihals

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!"


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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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[mtbcoach]

Thanks for the response I've read many times over in the many threads I've been through, I'll read the stickies again just in case I missed something.

I understand completely, not wanting to join the club, no offense taken I hope. I can see through my reading through the threads in dihals, awareness brings the good and bad.

Why I introduced myself in this area, I've learned to let the professionals do their job before I jump to any conclusions, self diagnosis or presumptions...

 

[dalvin]

Although we hope you don't need to be here, if it turns out you do, you'll receive a warm welcome and get lots of tips

 

[LaurieCALS]

Hi coach,

Let me send you a warm welcome from Florida!

I think you'll find this place an invaluable resource. Any question you have can be brought here. And even if there is no answer, at least you'll find a sympathetic ear. I recently joined, but I've been reading the posts here for quite awhile. There's some really nice people, I'm sure you've met some already.

Peace,
Laurie