ALS Feeding Tubes/PEG -Has anyone been taken off of it due to a recovery?

Status
Not open for further replies.

solidsnake007

Member
Joined
Jun 1, 2016
Messages
21
Reason
Learn about ALS
Country
US
State
Iowa
City
Waterloo
I am eager to hear of individuals who have been able to get off of the feeding tube and what they did.

Thanks!
 
Snake
People on here don't tend to come off feeding tubes. Because there is no cure or significant treatment yet we don't get better so the tubes are needed continuously.

Wendy
 
I have instances of when it has happened, just looking to gather more.

Snake
People on here don't tend to come off feeding tubes. Because there is no cure or significant treatment yet we don't get better so the tubes are needed continuously.

Wendy
 
Snake, if you have details of such cases, share, but if not, we don't host false hope and quackery here.
 
Quackery?

I just got a PM from you that was quite rude. Can we please be professional here. I have nothing to prove here. I am not here to be rude. Thank you.
 
Snake
Laurie is a moderator and works really hard giving up her time and expertise to protect and support us here on the site. We do get cases where people have believed in a treatment or so called recovery and it actually has no proven scientific basis. Our moderators protect us by not allowing that on here as people have been scammed out of large amounts of money that they could of been using to assist in making themselves as comfortable as possible.

If you have information on recovery and wish to share it and it is based on firm medical fact by all means please do so, I am sure you will spark a lot of interest and debate. But please do not get annoyed with our wonderful moderators they are just trying to protect us and you would be amazed at the number of trolls and people with ulterior motives they have to deal with.

No one is saying you are one of these people, we are just saying please understand you are talking to severely life limited people and if you are offering stories hope which then turn out to be false for us would be unbelievably cruel.

Wendy
 
ALS, in all but the very tiniest number of cases (and I mean well under 1%) goes only one way, it gets progressively worse. A very, very few cases are noted where there have been reversals or arrests in the disease, and we do not know for sure that those cases were caused to begin with by the death of motor neurons, because so very little is known about ALS.

There is no treasure trove or body of research on "improvement", and if you meet someone who gets off of a feeding tube due to improvement you have in all probability met someone who does not have ALS.

It's really all pretty simple, and as much as everyone here wishes the above were not true, it is.
 
Snake there are other diseases where people may have a feeding tube and after treatment may not require it anymore, cancer being one, but not ALS and if you knew anything about this disease, you would not make such a assine statement. I have a tube and I know I will have until the day that I die.
 
These occurences are not that hard to find, just use google. I refuse to be the one "bullied" about such topics.
 
Snake- there is no bullying. You are a brand new member who has stated you you have all sorts of information about ALS reversals, yet you have not actually produced said information. If you would like to be viewed as anything more than a person who came here to argue and dangle hope as a way to engage the members here, please provide the promised ibnfo. Otherwise you will not be viewed as a credible person.
 
You just revealed your secret, you are nothing more than a google researcher, and have no place here with your stupid nonsense. There are people here that are very sick and with this disease there is no hope and the last thing we need is a fool like you sputtered garbage that only a no mind such as yourself would do. We would all be better off if you left and didn't return.
 
It is not a secret lol

There is no hope? Yes there is!

The last thing people with this disease need is a place without hope.

You just revealed your secret, you are nothing more than a google researcher, and have no place here with your stupid nonsense. There are people here that are very sick and with this disease there is no hope and the last thing we need is a fool like you sputtered garbage that only a no mind such as yourself would do. We would all be better off if you left and didn't return.
 
Just like anyone else, trying to find answers, I have researched online. I am not much different from anyone else. I Just tend to be more optimistic than anyone in this group. Lets not view that as negative, please.

Snake- there is no bullying. You are a brand new member who has stated you you have all sorts of information about ALS reversals, yet you have not actually produced said information. If you would like to be viewed as anything more than a person who came here to argue and dangle hope as a way to engage the members here, please provide the promised ibnfo. Otherwise you will not be viewed as a credible person.
 
Time to stop snake.

The people here are extremely knowledgeable about everything out there in the als world. You insult us. Or you are a troll.
 
I agree that they are, but there is nothing wrong with optimism.

Time to stop snake.

The people here are extremely knowledgeable about everything out there in the als world. You insult us. Or you are a troll.
 
Status
Not open for further replies.
Back
Top