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rose

Extremely helpful member
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Mar 29, 2008
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DX MND
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7/2008
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US
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Maryland
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Anytown
I think we should be careful to not make blanket assumptions and statements.


For an example, fasciculation’s are not an “either/or” manifestation. It is not a case where if a person does not have ALS, and they have fasciculation’s, then the twitching must be caused by benign fasciculation syndrome. It doesn’t work that way.

Due to my involvement with this forum, I have asked my neurologist more than once as to what causes them. She works in the neuromuscular department at Johns Hopkins, hence well qualified to answer. She stresses that neurologists really do not have a full understanding of fasciculation’s. There can be underlying health problems that can affect the nervous system and cause nerve excitability and thus twitching and fasciculation’s. Sometimes these fasciculation’s are due to the denervation reinnervation process, most of the time there are other causes.
So, to make a blanket assumption that just because a person does not describe symptoms that fit those commonly experienced with a motor neuron disease, and express this assumption in the form of: [collective generic quote] What makes you think you have ALS? What you describe sounds nothing like ALS, you must have: A) BFS, or, B) health anxiety, or, C) Munchausen’s, or, D) a desire to have ALS etc. etc. etc. is condescending to the worried poster AND this is not beneficial to the overall effectiveness of this forum.

What if the person’s nervous system is disrupted because of a worrisome underlying illness? What have we done if we insist there’s “nothing” wrong with them, they need to get a life, and move on? Ideally what we should say is their symptoms don’t fit with what PALS on our forum have experienced with ALS. If we know someone, or we ourselves have experience in a similar type of problem, of course its more than appropriate to share that with them. Beyond that, its helpful to steer them toward a real doctor, not a virtual one, and encourage them if they are not getting answers from a doctor they’re currently under the care of, to go to a new doctor.

But, do we need to put that person on trial because they stumbled across this forum most likely due to an internet search of symptoms? As if it is somehow their fault than an internet search led them here?

Some of you may be aware that I worked for many years as a flight attendant before I was forced to retire due to illness. Let me relate some of what I’m trying to convey to flying.

Flight attendants are advised very expressly and clearly during their initial training, as well as throughout their career, that their job function is to “inform” rather than “enforce” FAA and airline regulations with passengers. But, no matter how many times this is stressed, there are those few flight attendants who just can’t let perceived or real passenger transgressions go. The seatbelt announcement/upright seatback/electronic devices announcement is made. And there will be some passengers who either deliberately or unintentionally do not comply. A flight attendant’s job requires them to address this with the passenger, and ask them to kindly act in accordance to what is expected of them. However, these few flight attendants that I’m speaking of, due to their personalities or whatever, just can’t let it go! They will stand over the passenger, arms folded; (tapping foot LOL) waiting to make sure their request is obeyed. Other than that particular flight attendant’s misplaced sense of authority, who exactly benefits from this?

Continuing with the flying analogy, what is a flight attendant to do if a passenger does not comply? Well, first off, if its nothing that is hurting anyone else, or against any laws, they should ignore this passenger and move on to others who will benefit from their attention. If it is a safety matter, the flight attendant prevails upon someone whom, in the chain of command, does have authority to enforce. (the captain, a gate agent, etc).

Applying this to our forum, and I am referring to all the forums, and all posters whether they be undiagnosed, or PALS or CALS; if we have a forum member who is posting aggressively or incessantly (in the case of the undiagnosed, after having asked and been answered) the best course of action could be to send that person a private message, or, click on the little icon on bottom left of post with the exclamation mark in a triangle to report the post if it truly is out of line, or privately ask another member for help in the matter. We don’t have a moderator we can go running to right now. Our losses have been great. With Joel, Richard and Al’s passing there is a gaping chasm these men once filled. If you benefit from our forum community, then do everything you can on your part to keep it a welcoming viable place for others to come to. I’ve had more than one person lament to me that they don’t know if it can even survive after we lost Al, and I’ve thought to myself that I don’t know if I have the heart to stay involved. But, the problem with that is there are, and will continue to be, people who need this forum. It is unique. It used to be known for being friendly and people would like to hang out here just because it was so welcoming. So, let’s do what we can to keep the climate one that everyone who needs to be here, will want to be here.


…So what about these people who we know don’t have ALS, because they haven’t given even one single example of a symptom that would be associated with ALS, but yet, they’re afraid they have ALS… once again relating this to flying, what would a flight attendant really be able to do to convince a terrified passenger that they are not doomed to crashing to their death? Think about it! Can a flight attendant do much more than reassure them that flying is safe? Perhaps give a few statistics in hopes of making them see reason? Of course not—that passenger—if that person has a true fear of flying, is going to be miserable, they will be relieved at the end of the trip, but until they safely arrive, they will feel that the worst case scenario is most certainly in their future. All the safety statistics in the world will not serve to really make them feel any more optimistic. AND, what’s more, once that person has landed safely, the next time they have to get on a plane, there are absolutely no promises that they will feel any safer.

Relating that to a scared non diagnosed person, if the person is afraid of ALS, and they’ve been told by their doctor they don’t have it, what are we as a forum going to be able to accomplish? That’s why we inform, we don’t enforce. We can ignore, we should give everyone the benefit of the doubt at first and offer support. If it becomes obvious that the person isn’t prepared to listen to reason, we just don’t keep responding. You just can’t beat your opinions into someone. It doesn’t work that way.

And, to those of you who are new here, and afraid they may have ALS; I am amazed at how many people think they need to start out by seeing a neurologist. Sure, you may eventually land in neurology, but, there is an accepted method to get there, that method is having real flesh and blood doctors whom you’ve been examined by, suggest they see a neurologist. ALS really truly is a diagnosis of exclusion, there are so many less well known, but also much more common diseases that can be the root of your problem. Remember, there are no Dr Houses (in fact he even retired LOL) If you have something simple and clear cut, yes, you can get a diagnosis in an hour, or week, or a couple of months. But, trying to jump to a specialty of medicine because you fear a disease is NOT the most expedient way to get the answers for why you are having problems.
 
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Rose, I love you! Perfectly said, and great analogies.
 
Like i've said before, Rose, You're the best!
 
I nominate Rose our Forum Moderator pro tempore
 
very well said Rose...Like****like
 
Thank you, Rose!
 
Brilliant!(in both senses of the word)
Thank you!
 
well said rose
 
As always, extremely well said Rose. I love the Moderator nominee suggestion.
 
Good job Rose, great analogy and thank you!
 
well said, my dear
 
Thanks everyone, this is something that has been weighing heavily on me of late.

I am flattered by the comments in regards to moderating, but I don't feel I can consistently devote enough time to do an ideal job. I've secretly been hoping that Ted will be asked. There are so many caring members, at least we don't have a shortage in this category.
 
Could not have been stated better. We need to always be kind.
 
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