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Thanks for all your welcomes and well wishes, if I can pass on any general advice (which I'm sure you've all heard before but I believe are poignant mantras) it would be this.. "nothing is more important than THIS day" "what we think, we become" and "Be the change that you want to see in the world".
 
They had 3 cases where ALS occurred approximately 6 months to a year after birth.... O.O
The progression was/is INCREDIBLY SLOW, fortunately.
Infantile ALS is actually related moreso to MS with its lifespan, since the longevity of those who have it remains unaffected.
 
Hi, Sorry to hear your fate as well. What kind of symptoms led you to believe it was ALS in the beginning. Guess noone is immune from it. I hope this note finds you well. Welcome. I am new too.
 
Well I was at college one day doing a speech when I suddenly couldn't complete the sentences without feeling short of breath, thought nothing much of it until a few weeks later when a friend of mine thought I sounded drunk at 10am. Went to the GP a week later who said I had tonsillitis, took the antibiotics he gave me with no change and my voice got gradually worse... About 4 months after my voice first started playing up I had some twitching begin in my left arm followed by weakness in my left hand, another week or 3 went by and I started coughing on beer and water (I was also crying at strange times as well which in hindsight started years before); I knew something was wrong but I was scared to find out. Finally I did an internet search and found Mnd, went straight to a neurologist and told her what I thought was wrong and sadly she agreed.. That's the basics of it (6 months in 10 lines!) and the rest is history.
 
I am so sorry. Life sucks sometimes for sure. That is how I noticed it on my sister her slurred speach. My mother thought she was drinking and I thought a stroke or something. She had been dropping weight fast then she lost movement in her arms and hands then went downhill from there. She was 59. My dad also died of it. He lived until 67. He was in the Navy. I assumed thats where it started it all and got spread to us.
 
...My dad also died of it. He lived until 67. He was in the Navy. I assumed thats where it started it all and got spread to us.
Hi momma, so sorry to hear that ALS runs in your family. Familial ALS is genetic so your Dad's being in the navy wouldn't have anything with your having it. I suspect if you know your Dad's family history you will see that there are earlier members of his family who also had it.
 
Dale, welcome to the forum. Your attitude sounds great...and I am sorry you've got this shared disease.

Mommagoose, I hope your tests show something else...treatable!

H4C, yes. Well put!
 
Wow,6? I read somerhing that said 12- and saw a news story stating 16 was youngest they had seen. I read a story that suggested some connection between ALS and veterans though. It seems like more are being diagnosed younger and younger. Very sad. Hope you get all the help that you need.
 
Dale were all in this together. Welcome on the journey, but sorry for your diagnosis.
 
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