I believe I am one of the very few (statistically less than 2%) people with ALS who have a diffuse onset. I need to clarify that this is what I think my type is, if it even is ALS after all. My initial diagnosis was PBP, however I was aware of right shoulder weakness, but, at time of initial diagnosis it was not clinically weak. My breathing difficulties were attributed to bulbar weakness.
Even though I have not had a different diagnosis, ( technically it is still bulbar onset), my neurologist and other medical professionals involved with my case all agree that I am not at all typical for a bulbar onset patient. The problem with them not being able to say "Oops, sorry, not ALS after all", is that nothing else has turned up.
I think if someone has not been in the actual presence of those with a "typical" type onset and progression of ALS, whether that be limb onset, or bulbar, they might not see why I say this. You can run down the list of signs seen with ALS and I have them, but yet I don't have them the same way as most do. That is why people just can't pick and choose symptoms that suit them to fit a disease. Test results, and the laundry list of what is wrong with me fit, but the way that it exhibits itself is not seen in the average PALS, and it takes someone with training and experience to discern that.
So, yes, there are a very few people who experience a more diffuse progression, but even they will have had to meet the criteria of the El Escorial (as I have, unfortunately)
The thing is that if you (Alex) are asking for yourself, which I am assuming you are, it is imperative that every other possible avenue is explored to its fullness. Its only ever ALS after it can't be anything else. There are a plethora of tests that need to be run, and if someone is not typical there is even more to rule out than a person exhibiting textbook onset. Just scheduling and getting the test results can take months, and that's if there is an active push to do it.
Most of the red flags for me, I was not even aware of. I was completely clueless as to the significance of my first EMG, I did not know my reflexes were off, I didn't realize I was not swallowing right, so much of this is quite insidious, it sneaks up, and the person becomes used to the changes and accepts them as normal until it either gets so bad that the problem can't be ignored, or they are pointed out to the person after test results or clinical exam discover them.
A good friend of my eldest son was recently hospitalized for a MONTH (as an inpatient) and they still don't know what is wrong with her. Three of those weeks were at Johns Hopkins! They have looked at everything even remotely possible, and don't know. (its nothing like ALS) So, real life is not like the TV show House, who solves medical mysteries in the space on an hour (has there even been a "to be continued" episode?)
