Best Friend Diagnosed with ALS/I am scared!

[bayoubutterfly]

My best friend was diagnosed with ALS thru a genetic test. I am so scared because as much as I read, it all sounds so ominous. He says he has read that he could go into remission.... And I read a blog by a doctor who diagnosed himself and treated himself.... "My ALS Remission Story" at Blogspot. Is anyone familiar with this kind of treatment? Does it work? Does anything work to help prolong his life?

I am so afraid of losing my best friend. I love him more than words can say.... I have never been so scared in my life!

 

[hjlindley]

there are different progressions but no remission. Take a deep breath your friend needs you. I'm sure you're up to it

 

[rstutes]

I understand your fear. My brother was diagnosed about 3 months ago. I am going to be his primary care taker. We have seen 4 neurologist. @ say its ALS and 2 have doubts. The only test we have left tis the muscle biopsy and lumbar tap.... The fear is the unknown of when the next sympton will appear and how bad will it be. It will be a difficulty journey . I will pray for your friend for comfort and also for you to have strenght during this time.

Robin

 

[MaxEidswick]

My best friend was diagnosed with ALS thru a genetic test. I am so scared because as much as I read, it all sounds so ominous. He says he has read that he could go into remission....

There is a lot of misinformation about ALS and MND out there. There is more they don't know than they do know, IMO.

ALS is difficult to diagnose, usually by elimination. I have never heard of a 'genetic' test. Anyone else heard of a definitive diagnosis mechanism?

Before you become too scared, see if you can get to a proper, respected ALS clinic.

Kind regards,

Max