How Long Has Everyone Had Als ?


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May 6, 2007
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I just wanted to know how long everyone has had ALS ?
hey Blairhanner,

you want to know how long everyone has officially ALS after the diagnoses? cause I guess that lots of us get symptoms years before the diagnoses.

My symptons started April 06 and I was diagnosed June 06. So I've had it 14 months.
Hi Omar,

SO how long have you had ALS ? And how are you doing ? Talk with you soon .
Dick has been diagnosed less than a year and was given 1 to 3 more months to live. He is on hospice. Very fast moving.
My dad had symptoms that we now think could have been ALS for about 4 years (balance problems). More extreme symptoms (loss of back, neck and leg muscle strength) began 2 years after that. He was diagnosed with ALS after developing bulbar symptoms (could not swallow solid food) only 3 months before he died.
My husband had symptoms for about four years. He was diagnosed in April 06. He lost the battle December 06. I hate this disease!

3 1/2 years now

My husband had symtoms for a couple of months before he was diagnosed in september of 2003. So he has had it for atleast 3 1/2 years now. He cannot move much, maybe just a slight movement with his hand or leg, or if he is sitting up, he can shift his body left or right a little. His speech is almost gone, it takes a little time to get what he is saying.
I have been diagnosed in August 2006
but I have had symptoms for 2 years now
By the way Jimercat thanks for the link it is an amazing organized site.
wow I love it ;)

i was diagnosed may22 06 but had ben having problums with the hands and arms for at least a year befor brent
Thinking of you

It's wonderful to read that people live strong despite this disease. This website is truly inspirational- and everyone here warms my heart :)

I'll pray for the patients and caregivers as much as I can this week- I hope for great things to come to us all!
Hi! Amelia,
My brother Timothy had symptoms for seven years. Suspected three years ago. Dx two years and five months ago. Total=Ten Years and Five Months. Atrophy in arms and hands June 06.

Like Omar said, you can have the symptoms for years. The Neuros. just can't get it until a certain point. They gave Tim the sam DX I have before they DX ALS.

Believe me, I dont want ALS. Its just frustrating what you are seeing and feeling and you try to tell the Doc.s, they just brush it off. After I go for more EMG and NVC this month. I am going back to my Neuro. one more time. And then I am brushing them off! I will keep seeing my Internal Doctor. She is very thourough.

How long did everyone start having symptoms prior to seeking a medical doctor-- and was the doctor a neurologist or an ALS specialist? And what was the first things the doctor tried to say they thought the problem was-- I know .. alot of questions-- but I would like to see how they correlate with my GP and Neuro statements. Also I am seeing a Holistic dr today to see if there is any optional treatment for the cramps and twitches although I hav enot been diagnosed yet-

Thanks- G
I was DX May 11, 2006, but had symptoms for 2 years before finally got the DX. Tests were mri, blood work (which showed elevated cpk,3000), emg, ncs, etc, finally a biopsy of muscle tissue.
The spasms came first and gp sent me to a Neurologist right away. After a year of the spasms begain to show significant muscle loss. Loss of ability to walk and keep balance. I have limb onset. It began in my feet, now has moved all the way to my neck after about 3 years.

God Bless
Capt AL
I have ALS 8years Ck is only 210 and thats only this year before that it was normal pat
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