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 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.
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-
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.