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ptich

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It was a few days before Christmas 2 years ago when a whole body tremor with hand weakness, followed by a wave of fasciculations, followed by a quick Googling, convinced me that I have ALS.

So may be now this is a good time for me, and hopefully I'll be followed by many other UALS (Undiagonosed) and NNALS (Nervous Nellies) on this forum, to

A. Declare ourselves ALS free. I mean, for now - there is no known immunity to this malaise, so nothing prevents us from catching it in future and start worrying again...

B. Stop bothering seriously ill folks on this forums with our petty concerns. ALS is when one has both UMN and LMN symptoms and feels lousy, too. Just having UMN and LMN symptoms (even real ones) does not qualify you as a PALS.

C. Utilize whatever we learned about ALS and (real) PALS by promoting ALS awareness and reasearch, to the degree we can (which is, unfortunately, not that much in most cases...)

Merry Christmas and Happy Hannukah to everybody
 

CindyM

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Hey Pitch! Excellent post! We must be on the same bandwidth because just this morning I decided from now on I am going to tell anyone who fears they may have ALS about my own story.

I had "dirty" emg's two years ago. My "Abnormal EMG" (quote from the report from the ALS clinic) showed chronic, moderate, nerve regeneration in both arms and muscle wasting below both wrists. The EMG also found muscle cramps in my right leg. But that was two full years ago and nothing has changed, except that I now have moderate breathing impairment and use a bi-pap at night.

You would think all this would be cause for concern, but it is not. I repeat: no cause for concern! Why? Because in this same period, PALS have gone from walking to using scooters or wheelchairs. Some have had to give up their jobs. A few can no longer eat and have Pegs implanted. More than one has died, bless them. Meanwhile, I remain weak, twitching, and mildly impaired. Exactly as I was in 2006.

Obviously, I do not have ALS or MND. If I allowed fear to rule my life, I would not be facing retirement with renewed contact with my extended family, closer relationships with my children and spouse, absolute joy in my grandchildren, and two new, albeit sedentary hobbies to enjoy.

Fear is debilitating. Anyone we know on these boards who actually has ALS does not seem to be as over run by fear as some of us undiagnosed sometimes are. There is a lesson here. I hope I remember it every day. Blessings and happy new year, Pitch. Thanks for your post.
 

ktmj

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I as much as anyone knows the fear of suspecting ALS. But I got out of bed this morning, cleaned up, and actually came into work to save a 1/2 day of vacation for next year.

For those of you diagnosed, I admire your bravery and courage - it is amazing to me. And for those that have something beyond "twitching", let's fight the good fight and focus on the blessed things in our lives. I counted my blessings this morning before I got out of bed, and they far outnumber the bad stuff.

I pray daily for each of us, the diagnosed'ed and the undiagnosed'ed, and hope nothing but the best for each of us. A little while ago I remembered brendapals motto - I might have ALS but it doesn't have me. As long as we have something to cling to, whether it be faith or family or friends, it is good.

There are people in this world that are fighting bad stuff with no knowledge of any disease, no internet, no doctors. Pray for them and let's count our blessings! If you live in a "first world" country you at least have that, and are probably better off than 97% of the world's population.

God bless each of you today!
 

awieleba

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agreed! We are beyond blessed to live here....
 

planningguy

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Thank you for the post Ptich. Sometimes we we do need to just count our blessings, and be grateful for the good things. Nice comment about getting involved too. When we lose ourselves in helping others its amazing how much "better" we feel.

Robert
 

wright

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I applaud you for that fantastic post, ptich. Bravo. I hope you are in a good place, are enjoying life and that you truly have peace of mind. Take care.
 

Marjorie R. Wilcox

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fears

Just last night on the car radio I heard a report on fear and diseases and their relations to each other. It is tried and true, says the report, that if you fear you have something.... you will likely get it. If you face the issue, but continue on the same without giving much heed to it, you will have slow progression if there is truly a disease involved. How about that, you paranoid people out there?

Of course, you get a brain tumor etc. you can't wish or think it away. That's not where I am coming from. I am saying that if you daily sit and think, "I could get ALS, I could get cancer, I could have a stroke" "I have twitches after exercise so I must have ALS or a MND." It is percentagewise more likely to come upon you.

Could it possibly be that that is why Rick's progression is so slow? He has a superb attitude. On March 12 he loss the use of his pointer finger on his left hand. He hasn't been able to bend it since. It is lumpy and stiff. He just holds it stuck out straight and uses the other fingers. He thought it might need to be xrayed so he asked the neurologist. The N said, "Nope" and we haven't mentioned it since. Honestly, Rick cares, I am sure, but doesn't dwell on it. He goes on.

Sure, he could wake up with something serious tomorrow morning. We are ready but not prompting it by worry. We have great plans for tomorrow!
 

CindyM

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Rick is right, Marjorie. Any of us worriers could get ALS, or Cancer, or a brain tumor next month or next year. Or we could step off a curb this afternoon and get run over by a truck.

The fear of getting hit by a truck does not keep many folks off the streets, I notice. The question is how to get people to transfer this ability and apply it to their fear of getting ALS.

I'd like to keep this discussion going. Several issues come to mind, and since we have a wealth of brain-power around here, I am sure we can come up with some answers.
So here are my questions for discussion:
  1. What can we do to help the "worried well" let go of their fear? Some people believe we come across as uncaring if we tell them to get help for anxiety. Others say we feed the fear by giving them "air time," so to speak.
  2. At what point do we tell folks they are wasting their time here? I know we are getting better at this. The average now-a-days seems to be six posts. A person will write in with their concerns, and after about six members tell them "this cannot be ALS," if the person still posts their fears then somebody usually mentions that it might be time for counseling or medications.
  3. We have never acknowledged how this must feel to PALS or CALS who might be feeling overwhelmed by the actual disease. I recall one PAL who was fed up by people saying "poor me," when they were essentially well. When I took her side in the discussion, world war three broke out. Somehow, it has to be OK to say out loud that the realities of living with debilitating fear are quite different from the realities of living with ALS.
So let's begin talking about these things. But let's do it kindly, and respectfully. We are sharing ideas, here. Not pronouncements.
 

BethU

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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. :)
 

Zaphoon

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This is a wonderful thread and bravo to Ptich and Beth and all else who remain sane on this forum. Kudos to Cindy and Al for great moderating, too!

You guys are great!

I hope you don't mind my presence on this fourm. I try to add a little levity, a little less whining and an occassional stomp (for which I sometimes apologize).

Zaphoon
 

brendapals

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wow

I'm just overwhelmed a bit right now.

Ok, I'm better, just had to breathe a little deeper!:lol::lol: I'm so glad to have this forum to read and learn more about how folks are coping with our disease. I hope I contribute some good advice, as well as humor at times, like Z said. Sometimes, it's very hard to read about the folks that are thinking they might have ALS after twitching for 2 or 3 weeks, but those are the times that I just read and move on. Works for me.
take care everyone,
-brenda
 

BethU

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Hey, Zaph ... we couldn't do withoutcha. :)
 

ptich

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BethU, there is probably an objective reason why number of nervous folks increased lately: I beleve that this desease is getting more prevalent (despite my neuro disagreeing), and a lot of folks get to know somebody who got sick , and start looking for symtoms... I don't think this forum can cope with the onslaught, that's why I suggested to close "Do I have ALS ?" forum.

BTW, this question is rhetorical anyway for anybody but professionals: I don't even see too many worrying people to whom we can say with certainty "get lost, this is not ALS"; most of them are coming with fasciculations, and there are plenty of examples when ALS presented itself with fasciculations only, for years, before other symptom appeared. So I really see no use in having this forum, as it cannot really answer any of the worries either way.
 

BethU

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Ptich ... I agree with you about the numbers increasing. It seems everyone I mention it to has had a relative or friend with ALS. And with the Boomers now reaching the age where ALS is more likely to appear, it's going to be a flood.

I agree with you, too, about a separate forum. It has to be totally confusing and scary for people who get here via Google, and read messages from people reporting all kinds of wild symptoms, not knowing that these people don't have ALS.
 

CindyM

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Beth- I appreciate your honesty. And you are not the first PAL to say this. I am glad we invited this elephant out of the closet.

Ignoring those repeated posts is a good way to go, Brenda. To the extent we can let the post and threads die, I think we should. It serves no purpose to feed into anyone's anxiety.

I like the "stock answer" since it saves time, but it also sends a consistent message. I think we will take this approach.

And everyone else must do their part. If 3 or 4 members say "this does not sound like ALS," then we need to let the thread die. It may die after AL or I give a stock response, but it dies forever when we stop responding altogether.

As for folks like me, who clearly have something going on and need support but don't know where else to turn, I think we need to find a role for ourselves. We need a way to contribute. Wright does it by imparting his knowledge, I volunteer my time, others turn themselves into researchers. I think our issues are with those who have nothing else to say except "poor me."
 
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