To all who are questioning Do I have ALS

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tripete

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Joined
Dec 5, 2014
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1,002
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Lancaster
There is a ton of information on this site that you can access to try and get answers. And while posting questions is allowed, until you are diagnosed it becomes a burden upon those who are caring for people with ALS and it is something that most of us with ALS do not want to deal with.

We all had to go through the very lengthy process involved to get diagnosed and while we appreciate your struggle with the process, it is just to much for us to have to read the way most of you are almost insisting that you have this horrendous disease.

In my case I believe that I am maybe two months to a few weeks away from passing away and answering these questions is not the way I want to spend my time. So private messages with questions is just to much.

Remember it is very unlikely that ALS is what you have. Please work with your doctors and I beg you not to let up until you find your answers but do not keep pushing for answers from people who are suffering.

When the doctors tell you something listen to them, yes study hard as you are your best advocate, but do not place your difficulties on those who are struggling to get through every day.

Finally if you are bent on it being ALS review the El Escorial criteria for ALS. Work with your doctor to see if you meet these criteria, as we cannot tell you if you are plagued by this nightmare.
 
AMEN........They don't even read the stickies. So they prolly won't read your comments, Pete.

If it wasn't for the DIHALS, there wouldn't be much going on here.

I'm not feeling it here lately.....I think I will take my ball and go home for a while:cry:
 
If any PALS or CALS is receiving uninvited pms ( especially more than 1) from a dihals please let a mod know
 
This makes me sad and frustrated on so many levels. Sad that long term forum members are not finding the forum a good place to come these days- in part because of the DIHALS subforum. I understand, having self edited many times for fear of providing fodder for self diagnosers and those with health anxiety to run with. People with mental illness, youthful thoughtlessness and profound selfishness are stopping people who deserve a safe place with people who KNOW the disease from gaining solace in some very trying times. That a person who is facing end of life concerns is having to tell people to stop contacting him with selfish questions is unconscionable.

Pete, thanks for posting your frustration here. Hopefully, it will prompt some serious self assessment in people who post here. Health anxiety should not preclude good sense and the understanding that there is a real serious selfishness in returning month after month to INSIST a twitchy thumb (or what have you) is ALS- even after multiple doctors, forum members and people in their own family have stated it is not.
 
Mark, I understand what you are saying about not feeling it. I have taken a "vacation" from the forum now and then, sometimes its just to hard to read and face. Some of those who have passed since I joined have deeply effected me (I sound like a mushy wimp). I always look forward to your comments and you will be missed if you stop posting, that said do what is best for you.
 
I'm sincerely very sorry about this. I don't know what to do to fix this. This website is vital for many. A small percentage of DIHALS, though, are causing pain. I'm happy to accept suggestions and criticisms.
 
I'm so sad to read this thread. Perhaps even sadder because I haven't found much going on either. I've stopped reading most of the DIHALS posts--especially those who promise time and time again to stop posting here. Unfortunately, there is so much sadness now over the losses we've experienced that the humor that got us through seems to have disapated.

Pete, a couple of months? My heart is breaking.

Mark, tell us a dirty story, please.

Nikki, Mike, Shiftkicker, thanks for being here. How do we get back to where we were? How do we turn the sadness around? This can't be the first time this has happened on this forum.

I've ignored friend requests from DIHALERS in the past. I don't have the energy to go one on one either. Shoot, some days I don't have the energy to talk to myself, and that's extreme....

Becky
 
Mike my comment where not directed toward the moderators, all of you are super and a great encouragement.

As for my "couple of months" statement. My breathing has declined very rapidly, I have not gotten numbers but I feel it. It is almost impossible to do anything and I am constantly falling asleep, even on vacation when I was in the chair, if we stopped for a few minutes I just fell asleep. So it just "feels' like the end is near. I have Dr appt. next week and I am sure it wont be great. My hope is not to ruin my wife's Birthday in early July.

I truly understand the DIHALS frustration with not getting any answers from the doctors, bu we are not the place to get that. They need to just keep pushing their doctors for the answers.
 
To be honest I think that there needs to be a limit on DIHALSers.

If they are allowed to post 20, 30 times or more and keep going after being asked to stop then I don't understand why the threads are not simply closed and if they start a new thread without something significantly new to add it should be deleted. I actually think this would be less work for the mods than coming up with constant replies to the ones that go on too long. It only encourages the next anxious person to keep posting long threads because they see others have done it.

I know it sounds harsh, and those who don't want to read that section shouldn't, but the fact is that we have had some PALS leave, who really needed support, purely because they found that section so distressing. After all, this site is supposed to be supporting those PALS, and DIHALS should be the smallest section of activity with people being answered and moved on quickly. We are not doctors and I think we should not get into long debates with any of them. We can say we think this or that, and tell them to see a doctor and that should be the end of it for the ones who don't have significant symptoms to report.

On the other note, this forum is what we make of it.
With the stress of ALS however it's very hard some days for PALS or CALS to be the one to step out and start a thread that is a bit funny, cheery or positive and get some banter they would like to read going.
But I would really encourage anyone finding these things hard - start a thread about what you would want to read.

If we all sit back hoping others will be the shining light, we may find ourselves in the dark.

Love you all, and if there is anything I can do, I'm in!
 
I came within a centimeter of not participating on the forums. What affected me most is how many pals we lost over the last couple of months. We all know it's inevitable but having to say goodbye almost every week to such kind and sweet spirits was just killing me.

I spent a couple of days contemplating what this forum is all about and what I feel this whole forum is designed around is support for one another. Our sweet pals who have passed stayed with us and provided support and guidance and humor and encouragement right up to the end. So for me, who am I to step aside and not try to live up to those who spent there final weeks trying to help all of us? So although I get mad, depressed, frustrated or discouraged, I'm going to stick with you guys. Your my forum family and we need each other.

Vince
 
Tillie, I think you hit the nail on the head about starting a thread you'd want to read.

Unfortunately, closing threads doesn't stop the worst offenders, and we, collectively, can't seem to just ignore them.

I was wondering earlier if the roll call threads, which I love, are not perhaps cutting down on the number of active member threads. I know that sometimes I put things there that could have been the basis for a seperate thread.

Why don't we all try to up our presence instead of retreating? I've done it myself-withdrawn--and I miss the life that we've allowed to pass out of this place along with the friends who have departed. I suspect that they would be sad to know that the place they filled with their wonderful spirits was fading because of their passing. We have new members as well as old who need more. Hell, I sure need more.

For those waiting on an answer:
- If you've seen a doctor who has told you that ALS is a possibility, please keep up posted.
- If more than one neurologist has said it's not ALS, please go away.
- If you refuse to see a doctor, please go away.

For those who belong here and miss what we used to have, I challenge you to start a thread. Good, bad, humor, pain, dreams, nightmares, questions, advice--whatever. Flood the forum with new threads so that when I search for new posts I see you.

Now for another glass of wine. Come to think of it, I miss the pub...

Becky
Queen of Everything
 
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