Several years without a diagnosis doesn’t mean several years without a symptom. It usually means several years of obvious symptoms, true weakness, but not enough elements to make a final diagnosis. A month ago at my one year check up with my neurologist, he mentioned a patient he has, a woman, for whom it took a couple of years to be diagnosed. He told me it started with a true foot drop in her left leg. No pain, no numbness, no cramps, no twitching, no tingling or pins, just the muscles of her foot that couldn’t raise her foot anymore. Then it progressed to the whole leg, and finally a foot drop appeared in the right leg. In the beginning she was sent to orthopedists instead of neurologists, and a doctor thought she had some severe back issues. Based on that she had a back surgery with of course no improvement. Later and after nearly two years of obvious symptoms, a diagnosis of MND was made, at that moment she was already in a wheelchair. So people should not confuse the period between first symptoms of obvious clinical weakness and a final diagnosis which can vary from a few weeks to a few years, and the period between only twitching with no clinical weakness and then the onset of weakness, which is completely different. This is why I do not give a lot of importance to some anecdotal stories written on internet either on the ALS forum or elsewhere, because we read what the person says from her own point of view without being able to check his medical records or to ask his doctors if the story as being reported on internet matches the medical records of the patient or not. That’s why I prefer to rely on published medical studies made by experts rather than the subjective opinion of someone who does not have any medical background.
