To me, the way this thread progressed is disturbing on several levels. The bottom line is that the forum is a support group, here to offer support. Just because we don't have the responsibility or ability to diagnose, that does not give us license to make light of another's fears.
Its been said more eloquently before, but, IMO if you don't have something constructive to say, just skip over it and go on to the next thread.
AND if Al, and Wright, and Trfogey, and Sadiemae, and... and... and... have all taken the time to give you honest answers, DON'T turn around and make a new post or thread, asking the same @#$%* thing, just worded somewhat differently!
This forum within the main forum is designated for those who haven't a ALS diagnosis to ask questions.
Just as the forum is here to ask questions, it is also, IMPORTANTLY here for the one to asks, to actually listen to the answers offered.
It is a frustrating situation for members who take the time to offer advise, only to have it repeatedly disregarded.
Yes, there are a lot of crazies out there, they probably populate all of the disease forums. My most recent post on this topic was to make the new thread titled "support forums." I started it in the effort to help stave off the overload of worried newcomers that appear annually each holiday season. And, no, "crazies' is not a respectful designation for those who are suffering from anxiety, and anxiety only. But, we do get oh so tired of the SAME questions over and over and over by this sort, that hopefully my use of the word will be forgiven.
For those who are not hypochondriacs, and truly are dealing with a problem that is neuomuscular, the very LAST thing they need, is to be told they should be happy. Of course they should be happy, just like those with ALS should be happy that they don't have cancer too (unless they do) or MS too (unless they do). The unknown is hard to deal with.
There are more than one or two PALS who have confided in me that they were hesitant to get more involved in the forum because of how their earlier queries were received before they actually had a diagnosis.
And, I see the contradiction that I, as well as others are guilty of. We try to reassure newcomers that ALS doesn't hit you suddenly, its gradual. But, on the other hand, we tend to tell everyone that if you can do "____" (you fill in the blank ~ walk with no problem, work with you hands, swallow, talk clearly, etc etc) then you aren't experiencing true weakness or symptoms of ALS so don't worry, be happy. However, the truth for most is that symptoms do come on gradually. So, what kind of message are we sending out? Hopefully its not that we think every undiagnosed poster should not bother mentioning what worries them until their problems are the point of not functioning.
I can tell you that from a personal standpoint, I know full well how hard it is to not know what's wrong. I did not really know much about, or think about motor neuron diseases. I was convinced, as were my doctors at first, that I suffered from an autoimmune condition. When my first EMG came back bad, I was CLUELESS! I felt vindicated that finally something showed up that explained my voice problems. I said to my loved ones, "See, the doctor says I have active and chronic denervation and reinnervation, so whatever "it" is, its been happening over and over for a while now. (i.e. I'm NOT crazy afterall). None of my doctors told me the ramifications at first, and I was actually happy, because I thought it meant we were at the end of a long search, and treatment was right around the corner. (wrong!)
I hope Alexandre got some good news at his neuro appointment, and that he comes back to share this.
