Important Posting rules

David

Moderator
Joined
Apr 24, 2003
Messages
307
Reason
Other
Diagnosis
00/0000
Country
CA
State
ON
Our support forum is aimed primarily at people directly affected by ALS.

If you have ALS, have already been diagnosed with ALS, or are here because a family, friend or loved one has ALS, then please skip below to review the general rules.

Concerned about symptoms of ALS

For individuals worried about symptoms and whether they have ALS, you must adhere to the following rules.

These rules have been created to reduce the stress and strain on our membership and moderators. Users not following our simple rules will be removed from our community. Please be respectful so that we're able to help you and others.
  1. If you're concerned about symptoms of ALS you must ONLY post in the forum titled: Do I have ALS? Is this ALS?
  2. ONE THREAD LIMIT: Only post one thread and keep all responses and dialogue within that thread
  3. DO NOT wander to any other forums to post until such time as you've received a diagnosis

General rules for all:
  1. Be nice and friendly: no bashing, hate or nastiness
  2. Promotions, fundraising, and commercial activity are prohibited
  3. Post only "authoritative" URLs or links
  4. Bullying is not tolerated here
  5. Do not create multiple accounts in order to circumvent rules about posting worries about suspected symptoms
Our full terms can be found here: Terms of Use

Anybody not following the rules will either be warned or removed from our community.

We're here to help, so please help us make that task as easy and peaceful as possible.
 
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Hammertime

Member
Joined
Apr 27, 2019
Messages
15
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
FL
Our support forum is aimed primarily at people directly affected by ALS.

If you have ALS, have already been diagnosed with ALS, or are here because a family, friend or loved one has ALS, then please skip below to review the general rules.

Concerned about symptoms of ALS

For individuals worried about symptoms and whether they have ALS, you must adhere to the following rules.

These rules have been created to reduce the stress and strain on our membership and moderators. Users not following our simple rules will be removed from our community. Please be respectful so that we're able to help you and others.
  1. If you're concerned about symptoms of ALS you must ONLY post in the forum titled: Do I have ALS? Is this ALS?
  2. ONE THREAD LIMIT: Only post one thread and keep all responses and dialogue within that thread
  3. DO NOT wander to any other forums to post until such time as you've received a diagnosis

General rules for all:
  1. Be nice and friendly: no bashing, hate or nastiness
  2. Promotions, fundraising, and commercial activity are prohibited
  3. Post only "authoritative" URLs or links
  4. Bullying is not tolerated here
Our full terms can be found here: Terms of Use

Anybody not following the rules will either be warned or removed from our community.

We're here to help, so please help us make that task as easy and peaceful as possible.
Hi David,
I just received a message regarding not reading my emails. I'm not sure what this means. I certainly want to follow the proper protocol. If you have any advice on what I might be doing wrong or where I might go to learn the proper steps in the Forum...I would greatly appreciate it. I must not be navigating through the Forum in the proper manner???
I'm going to be seeing an ALS specialist on Thursday.
One way or another, I think I will have some concrete anserrs. This neuromuscular specialist who only sees patients with motor neuron diseases. I appreciate your input and all the information I received of the last couple of days. I'm sure I will get used to navigating through the rules and Forums in the near future.
Please be assured, I have no intent of disregarding the amazing work you do and support you provide
What a blessing to be a part of this vital Forum.
Thank you for your feedback.
All best,
Mary Ann (Hammertime)
 

David

Moderator
Joined
Apr 24, 2003
Messages
307
Reason
Other
Diagnosis
00/0000
Country
CA
State
ON
Hi David,
I just received a message regarding not reading my emails. I'm not sure what this means. I certainly want to follow the proper protocol. If you have any advice on what I might be doing wrong or where I might go to learn the proper steps in the Forum...I would greatly appreciate it. I must not be navigating through the Forum in the proper manner???
I'm going to be seeing an ALS specialist on Thursday.
One way or another, I think I will have some concrete answers. This neuromuscular specialist who only sees patients with motor neuron diseases. I appreciate your input and all the information I received of the last couple of days. I'm sure I will get used to navigating through the rules and Forums in the near future.
Please be assured, I have no intent of disregarding the amazing work you do and support you provide
What a blessing to be a part of this vital Forum.
Thank you for your feedback.
All best,
Mary Ann (Hammertime)
Hi Mary Ann, this new community software is almost too slick for it's own good. I can see where you might have thought this was a personal message directed to you.

The notice you saw was for anyone visiting the "Do I have ALS" page; a general notice, mostly aimed at new comers. Linked from that general notice is this forum here, public to everyone, where we're communicating now. Also a general public post (save having to have all the rules listed on the main forum page).

Short answer, no, you're not doing anything wrong. Funny though :) Might have to tweak things if this becomes norm, although I think if you saw that message from day 1, like people will moving forward, you'll be accustomed to it and not "take it personal" :p

Cheers
 

Hammertime

Member
Joined
Apr 27, 2019
Messages
15
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
FL
Hi Mary Ann, this new community software is almost too slick for it's own good. I can see where you might have thought this was a personal message directed to you.

The notice you saw was for anyone visiting the "Do I have ALS" page; a general notice, mostly aimed at new comers. Linked from that general notice is this forum here, public to everyone, where we're communicating now. Also a general public post (save having to have all the rules listed on the main forum page).

Short answer, no, you're not doing anything wrong. Funny though :) Might have to tweak things if this becomes norm, although I think if you saw that message from day 1, like people will moving forward, you'll be accustomed to it and not "take it personal" :p

Cheers
Thank you, David, for the information!! I feel better after reading your reply!!! You've got quite a job keeping things in order!! I wish you all the best.
Cheers to you!!!
 

vivianwhy

New member
Joined
May 20, 2019
Messages
0
Reason
Other
Country
US
State
TX
Our support forum is aimed primarily at people directly affected by ALS.

If you have ALS, have already been diagnosed with ALS, or are here because a family, friend or loved one has ALS, then please skip below to review the general rules.

Concerned about symptoms of ALS

For individuals worried about symptoms and whether they have ALS, you must adhere to the following rules.

These rules have been created to reduce the stress and strain on our membership and moderators. Users not following our simple rules will be removed from our community. Please be respectful so that we're able to help you and others.
  1. If you're concerned about symptoms of ALS you must ONLY post in the forum titled: Do I have ALS? Is this ALS?
  2. ONE THREAD LIMIT: Only post one thread and keep all responses and dialogue within that thread
  3. DO NOT wander to any other forums to post until such time as you've received a diagnosis

General rules for all:
  1. Be nice and friendly: no bashing, hate or nastiness
  2. Promotions, fundraising, and commercial activity are prohibited
  3. Post only "authoritative" URLs or links
  4. Bullying is not tolerated here
  5. Do not create multiple accounts in order to circumvent rules about posting worries about suspected symptoms
Our full terms can be found here: Terms of Use

Anybody not following the rules will either be warned or removed from our community.

We're here to help, so please help us make that task as easy and peaceful as possible.
Hi David,

I joined this forum because while I don’t have ALS, I have a rare and uncurable neurological disease that has advanced significantly and am looking for advice. Is there an appropriate place for me to post?

Thanks,
Vivian
 

David

Moderator
Joined
Apr 24, 2003
Messages
307
Reason
Other
Diagnosis
00/0000
Country
CA
State
ON
Hi David,

I joined this forum because while I don’t have ALS, I have a rare and uncurable neurological disease that has advanced significantly and am looking for advice. Is there an appropriate place for me to post?

Thanks,
Vivian
Hi Vivian, we just focus on ALS so it might not be the best group for topics unrelated unfortunately.
 

vivianwhy

New member
Joined
May 20, 2019
Messages
0
Reason
Other
Country
US
State
TX
Hi Vivian, we just focus on ALS so it might not be the best group for topics unrelated unfortunately.
To be more specific, I’m being recommended a peg and am worried how it fits in with my quality of life. I’m looking for opinions on that and end of life care/decisions. It is really hard to get information on my disease/situation specifically (NF2) despite a support group, and the decision deadline seems imminent. I lurked around here yesterday and found the stories very helpful and thoughtful, despite being from another disease.

I just don’t know where to turn.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,754
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Vivian, you’re welcome to lurk on this forum, but unfortunately we can’t otherwise accommodate your needs and request that you not post further. There are online support groups regarding PEGs and tube feedings. I understand there is an active tube feeding group on Facebook.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,857
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Hi Vivian. You are welcome to lurk and read as much as you wish i am sorry we do not have the resources to support other diseases here. For PEG concerns you might try the Adult tube feeding group on Facebook which has people with a variety of diseases who need feeding tubes. Many people with ALS have found it helpful

Best of luck
 

cureals**2019

New member
Joined
Oct 16, 2019
Messages
3
Reason
Other
Diagnosis
00/0000
Country
US
State
LA
Our support forum is aimed primarily at people directly affected by ALS.

If you have ALS, have already been diagnosed with ALS, or are here because a family, friend or loved one has ALS, then please skip below to review the general rules.

Concerned about symptoms of ALS

For individuals worried about symptoms and whether they have ALS, you must adhere to the following rules.

These rules have been created to reduce the stress and strain on our membership and moderators. Users not following our simple rules will be removed from our community. Please be respectful so that we're able to help you and others.
  1. If you're concerned about symptoms of ALS you must ONLY post in the forum titled: Do I have ALS? Is this ALS?
  2. ONE THREAD LIMIT: Only post one thread and keep all responses and dialogue within that thread
  3. DO NOT wander to any other forums to post until such time as you've received a diagnosis

General rules for all:
  1. Be nice and friendly: no bashing, hate or nastiness
  2. Promotions, fundraising, and commercial activity are prohibited
  3. Post only "authoritative" URLs or links
  4. Bullying is not tolerated here
  5. Do not create multiple accounts in order to circumvent rules about posting worries about suspected symptoms
Our full terms can be found here: Terms of Use

Anybody not following the rules will either be warned or removed from our community.

We're here to help, so please help us make that task as easy and peaceful as possible.
I am so sorry if I posted my question in the wrong area. I absolutely want to follow the rules and do not upset anyone.
I am just trying to educate myself and support of this disease.

Thank you,
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,560
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
Vivian, you didn't state your MND but you may have missed other sub-Forums
here on the site as you wrote...

"I joined this forum because while I don’t have ALS, I have a rare and uncurable neurological
disease that has advanced significantly and am looking for advice. Is there an appropriate place
for me to post."

Just to help mew members, new readers with concerns… down the page
the Forum does have MND Forums that are not tightly defined as ALS.

The Forum is not just dedicated to ALS alone.

Related Conditions
The following conditions are similar to, or related with ALS. Choose the appropriate forum for your discussion.

Primary Lateral Sclerosis.
Progressive Bulbar Palsy.
Progressive Muscular Atrophy.
Multifocal Motor Neuropathy.

I don't know if these sub-Forums are for those who been actually diagnosed or if to
those who have concerns of those MNDs.

Maybe this could be added in some way up front.
 
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