Old 07-20-2012, 01:11 PM #16 (permalink)
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Default Re: Fresh Start ...Hopefully

I find that I'm saddened by the responses to threads as of late.

Yes, the majority of the members here have ALS have cared for one with it, or have just been here so long, they belong.

When I first came here, people were nice. We didn't assume everyone was some sort of a scam. Someone mentioned Kell--Allen and I PM'd about our concerns..it was kept off the forums.

While it's possible that this person Healthy/Whoever is having some sort of sick pleasure out of posting, it's much more likely that it is a person that is so anxious about their symptoms that they are posting as two people because as just the "One" they were not getting answers--and wanted to be sure.

We all get to the point that we get tired of answering the same questions. Allen was a huge supporter of tough love. Al was adamant that trolls were ignored. Richard would have closed the duplicate threads with a warning to stick to one thread, or something similar.

I've been less than nice to some folks here when I and many others have said the same thing over and over--eventually, I give up.

But when did this part of the forum become more about the 'attack' and less about the support? This thread was posted by ONE individual-and there are at least 4 others mentioned. It's rude. It's also potentially harmful. We don't KNOW who is behind that screen. We don't know if it's someone who is scamming, someone who is so distraught with their issues that they see no way out--or someone who is just genuinely concerned with strange health concerns.

This is the "Do I have" section. It's specifically for those that wonder. If it bothers you greatly to answer posts here--then simply don't. It's that easy. There isn't a problem with saying "Pick a name" or "You have another thread" but to jump someone that has apologized--is just not right, I don't think.

What if the next person that posts here does have ALS-and while they come here for 'support' they see nothing but bashing of newcomers?

If the only thing we were going to say to folks here is "See your DR" there would be no point for this part of the forum.

To Healthy1-- NO--ALS would be very unlikely to progress as you're thinking. It's not that fast. Clean EMGs means no ALS in almost all cases--especially when there are LMN signs. The "normal" EMG issues with a later discovery of ALS are almost always because it presented with UMN issues only or there were multiple things showing in the tests--such as trapped nerves that changed the result interpretation.

Continue with the anxiety issues--and see if a doctor sees the atrophy you do-if not, try to relax and don't drive yourself nuts.
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Old 07-20-2012, 01:42 PM #17 (permalink)
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Default Re: Fresh Start ...Hopefully

Hello notme,
Thank you so very much for your reply. I am exactly the person that you describe. I am very anxious about my symptoms and i am simply attemting to gather feedback from those much more educated than I. Posting as two people was irresponsible and I take full responsibility for those actions.
I am pleased that yourself and many others understand my plight and continue to provide your input. Your support is tremendously appreciated.
Sincerely
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Old 07-20-2012, 03:38 PM #18 (permalink)
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Default Re: Fresh Start ...Hopefully

Healthy, I strongly suggest you delete the duplicate account and put real information in this one. The folks here have been burned so many times, they are very hesitant to expend their limited energies on what seems to some as being a scam.

Remember, many of these fine folks are posting with one finger, their eyes, and in some cases, even their toes in an effort to help those concerned. This is why we ask new members to stick to one thread as much as possible, and certainly one name-make it easy for those that can and will offer support.

It will take time for you to be taken seriously here, but this is a fine group of people. Your anxiety is taking over. It can and does make things seem worse. If the doctor mentioned no atrophy, it's not there. If they DID mention it, they would not blow your concerns off, that simple. good luck to you
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Old 07-20-2012, 06:42 PM #19 (permalink)
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Default Re: Fresh Start ...Hopefully

Patty, thanks for following up my thoughts exactly!
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Old 07-20-2012, 08:13 PM #20 (permalink)
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Default Re: Fresh Start ...Hopefully

Ok,
You screwed up, got caught, you fessed up!

Nobody here wants ANYONE to have this terrible disease, so please don't taint the forum by having multiple entities.
It shows an overall disrespect for everyone who fights for their life on a daily basis here.

Bottom line is, the advice given seems unanimous, so chill out, relax, and good luck.

Casey
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