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

[WendyWooG]

Optimism is ok, I am an optimist I make the absolute best of the situation I am in and thoroughly enjoy and make the most of my life. I am however also a realist and accept my situation.

There is a lot of very exciting research going on and I am sure a cure or more effective treatment will be found. However at the moment there is no medically proven effective treatment that provides reversal. If you have information on one that can be backed up by solid fact and is approved by all means share tell us rather than playing silly games.

Dr Google is not a friend to us on here, you can indeed if you search come up with lots of places claiming effective so called cures. If you delve into them with more than Rose coloured glasses ( and I have ) you will find that a lot of money is involved and not a lot of solid evidence.

Optimism is good for us blind gullibility is not. To be honest I don't usually get confrontational on here, every one has a right to a voice but you just seem to be trying to stir up trouble!

This site is full of stories of hope and wonderful support from people going through a horrible disease, if you don't realise that from reading the posts on here it's sad. Just because we don't blindly leap at miracle cures does not mean we have no hope.

I apologise if I offend anyone! Rant Over......

Wendy

 

[KimT]

Snake,

I have read this whole thread. I am an optimistic person as are many here. Please understand that some PALS are typing with their eyes and it might take a half hour to post a few sentences.

I was a university professor and have published textbooks. I know how to research and I know how to find information using the Internet. I also know that the Internet is full of claims of cures, reversals, halts to progression. I also found that many people are either misdiagnosed by a doctor or self diagnose themselves with ALS and, later, find something that helps them. These people never had ALS to begin with.

Some PALS get feeding tubes well before they need them. I know of one PALS who did this and was still eating on the day he died. He died from respiratory arrest. He had the feeding tube placed because his breathing had declined to what his doctors believed was "either do it now or never."

I'm not sure why you are here but I think this thread has provided you with enough feedback for your satisfaction. Perhaps a Facebook group or other forum would be able to give you the answers you seek.