While I did have some compelling physical symptoms that caused some medical folks to be worried and refer me onward and upward, I KNOW I came across as a basket case in the DIHALS forum.
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I can only imagine how enraging it must be for people with ALS who are confronting grief, loss and fear to see people INSISTING they have a terminal disease because their fingers are twitching. The sheer selfishness and entitlement of the anxiety ridden in insisting people struggling with ALS owe them reassurance and support is mind boggling.
My mother... and I'm sure most everyone else's mother... always said, "if you don't have anything nice to say then don't say anything".
I guess kind of my point here is, just like Shiftkicker stated... 'I know I came across as a basket case'.
But, in fact, she actually had a MND.
The first actual neurologist I saw told me that I had 'Abulia', and that all of my 'perceived' problems were related to anxiety.
All of my problems were caused by a complete lack of motivation to actually initiate any actions or thoughts.
He then prescribed Prozac.
9 months later I was diagnosed with ALS.
Now, as ignorant as human emotion is, I actually felt more vindicated than concerned.
Of course this went away very quickly, but what a sad thing to even enter into someone's mind.
All of the people (excepting for perhaps a few trolls) on the DIHALS board are sincerely concerned about what, to them, is possibly the beginning of the end of their lives as they now know it.
Of course these people want to hear that they are ok, but this is sometimes very hard to accept when our minds are convinced otherwise.
Sometimes it is difficult to see reason even when we want very badly to.
I see some very rude comments made to many of these people, by people on this forum, that are completely unnecessary.
(Please... I am not talking about any one person, just something that I see a lot)
These comments are not helpful to anyone.
I agree that it can be very frustrating to watch people who are terrified by a small twitch in their lip, and who won't listen to reasoning of any kind.
But, to me, If this is frustrating... then simple quit reading about it.
Basically, if we have nothing good (or useful) to say, then we should just quit reading the posts.
Once advice is given and clearly not received, it is time to move on.
Though some of these people pretty obviously are just suffering from anxiety, who really actually knows about most of them?
I would venture to say that even the doctors don't really know, as was the case with my first Neurologist.
Just as Shiftkicker said, if I had come here with my first noticeable symptoms I would doubtless have been mocked and chased away.
Aphasia, living in a fog, cramps, perceived weakness and fatigue all over, a lack of motivation, and, oh yes, a tiny twitch in the thumb muscle in the heel of my left hand.
