pdodge715 wrote:
1. He wasn't diagnosed with ALS right away because it is exceedingly uncommon in our age group, so his doctors most likely weren't even considering it at first.
Although I could not find an exact timeframe of his symptoms but with some deduction it seems he was diagnosed within a short time. Less than a year, maybe 9 or 10 months which is somehow common for MND diagnosis, since MND is a diagnosis of exclusion.
pdodge715 wrote:Pete found ALS via google in October 2011 (so it was probably shortly thereafter that they started looking for it) and was diagnosed 5 months later in March 2012
While reading about his story I found that he injured his wrist in August 2011, the wrist didn’t heal although it was not broken. After just 2 months in October 2011, he found ALS while Googeling and on one ALS site he founds that he shared 10 of the 12 ALS symptoms listed on that website; 5 months later he was diagnosed. BTW at that moment October 2011, 2 months after his injury he couldn’t button his shirt, and was experiencing a lots of fatigue. He said that he was so tired that when going out he had to periodically rest for short naps. Now before his wrist incident he said he was already experiencing true weakness especially during his baseball play and was worried about it. This weakness followed the onset of twitching but it seems the timeframe was short maybe a few weeks. So the whole thing from twitching to diagnosis seems to have been less than a year.
BTW people should not make confusion between ALS starting with twitching and patients noticing twitching as a first sign. ALS starting with twitching would be, twitching first, with good clinical, good EMG done by a competent Neuro, and a diagnosis of benign twitching that turns later to be malignant. Most people who said there MND started with twitching went to the doctor when weakness appeared. So probably at the time of the twitching clinical and electrical signs were already present, but the patients did not seek any medical attention, contrary to most people here who spend more time at their Neuro’s clinic than in their own home.
pdodge715 wrote:I think the thing that is most frightening for us about Pete's story is that he is an extreme statistical outlier.
I don’t think he was a statistical outlier. The timeframe seems normal, the symptoms seem within the frame of what we already know here, and many professional, semi-professional and high-level athletes suffered from ALS at a young age. Under 50 and often under 40. So what Dr. Eisen said here in his email to Helen, that 8 months of twitching without clinical weakness, atrophy or electrical changes are enough to rule out ALS, seems once again to be a valid statement.