Hi, Cindy ... I vowed to stop posting here for a while because I am overreacting, and getting unnecessarily hostile and personal. I won't blame it on the meds ... I take full responsibility for my sarcasm in other posts, and apologize to PALS and CALS who were rightly distressed by it ... but your message brings up what I've been obsessing about for a day or two, so I can't resist.
What frosts my flakes is that people who have had a twitch on their elbow for 2 weeks (or 20 years) and clearly have no physical health issues whatsoever find this such a wonderful forum where they can vent all their anxieties.
The reason it frosts me is that ... because of them ... I DON'T have a place where I can vent mine because I censure literally everything I write on this post so as not to alarm the "lookie loos." I don't dare mention half my symptoms because they would send the lookie-loos sky-rocketing into space with hysteria.
Even in response to your calm and intelligent post, I dare not mention some symptoms because they are common to so many other diseases and are not (usually/ever?) associated with ALS. I clearly have something else going on besides ALS, but I can't discuss it on this forum or ask for information or support because it would alarm the lookie loos too much ... Most of us can clearly distinguish between ALS symptoms and other symptoms, but people who are here because they have psychological/anxiety issues cannot.
I'm currently waiting for my insurance/case managers/MDA/clinic/PCP to sort out who is to do the following tests or approve the following appliances: Lung function, BiPap, Feeding Tube Implantation, EEG awake, EEG sleeping, MRI, and a gastric fluoroscopy (probably connected to the feeding tube). My speech is gone, so I am depending on others to make calls for me. My lung function at UCLA was 49%, but I am fighting to light a fire under my pulmonogist to get those UCLA results so he can get insurance authorization for a BiPap, which I need almost as much as I need a feeding tube (despite my magic milkshakes, I've lost 5 pounds in the last couple of weeks, because it has become so time-consuming to get food inside me; I have to sleep some time). I've got two different sets of seizures going on, one probably connected to ALS, one, I think, not, but I'm guessing on both and am pretty anxious myself for answers. So I would really love to have a forum where I could discuss this stuff.
So: here's the nut graph, as newspaper types would say. When I hear that the woman with the twitchy elbow has made and then broken appointments for an EMG, I think to myself: "Golly gee, she has wasted valuable time that the neuro could otherwise have spent helping people who are actually sick. I bet she's not really concerned about ALS at all."
And here is an even nuttier graph ... and more importantly: Why do we (who have ALS) have to constantly monitor what we post on our support forum so we don't alarm or hurt the feelings of those who are not sick? You ask:
What can we do to help the "worried well" let go of their fear? Is that our responsibility? Anxiety is a medical issue. We cannot "cure" other people's panic attacks. Medications and counseling can. And even if we could, is that the purpose of this forum? To gather together a group of PALS and CALS in order to soothe and comfort people who are not physically sick, but who have emotional or psychological problems that make them think they are?
We all identify with anxiety and panic attacks. (Been there, done that.) And I think we all try hard to be supportive of the "worried well" when they wander into our forum, and explain to them as politely and kindly as we can that their symptoms are not related to ALS, and/or that they are asking questions that need to be addressed by medical specialists. We are so lucky to have Wright on board to actually give clear-cut, authoritive explanations ... this is a real public service. But to me ... the "worried well" get one or two go-arounds of us answering all their questions and patting them on the head. When it becomes clear that they are asking the same questions over and over ... and not reading the answers we provide, nor listening to their neurologists, or in some other way proving they have no real concern about or interest in ALS, then I think they need to be cut off.
Perhaps our moderators could put in a stock reply, something along the lines of:
You have been told by your neurologist that you do not have ALS, and/or your questions have been answered and you do not appear to have symptoms of ALS or similar neuromuscular disease. We suggest that you talk to your doctor about other conditions that may be causing these symptoms, or check out the following online forums (BFS, etc., etc. there are a ton of support groups out there for anxiety disorders) Whatever.
If people are told by neurologists that they do not have ALS, or told by Forum members that their symptoms do not indicate ALS ... but they persist in posting the same questions over and over here, it is clear that
medical issues are not their concern: They are seeking answers to problems in their lives that we are not prepared to handle, and they need to be directed to professionals who are equipped to handle them.
Anxiety and panic attacks are "real" and need to be dealt with medically. Otherwise, we are just enablers who help feed their anxiety and keep them from getting the help they need.
And ... continue to Carpe the friggin' Diem, folks. It's all we've got.