us it is very very different! Even the most experienced of neuros can't have experienced all the neuro categories listed in this key sticky site's index:
http://neuromuscular.wustl.edu/alfindex.htm
Read it at your leisure and turn your brain into peanut butter!
Some neuropathies come on slowly and take decades to get diagnosed, others come on rapidly [my own did] and even then it took a heap of effort and over a year to get diagnosed...and I KNOW I was very very lucky!
Sometimes, for a few folks, things just go away. For others they get sicker and die. For the rest of us, we simply have to make the best of what resources are available to help us...be they meds, doctors, therapies, supplements or whatevers to get by.
Yes the first, foremost and greatest fear is IF things seem to be getting worse! I am not shy about calling my neuro when I'm sure such things are happening! I call 3 times a day until I either get an appt. or an answer from him! But then, I've been working with my neuro for over 4 years and he knows I'm not going to say 'the sky is falling!' unless something is really off kilter. Like you, I play/replay all what has happened to me before and after my onset and now, what might be logical in terms of 'setting' off new symptoms. That way the doc and I don't have to tip-toe around during the office visit and get down to business.
I HAVE had some areas of progress, and some set-backs. But I know what is helping the progress and what is causing those pesky/scary set-backs.
Understanding and learning as much as a non-technical person can about what happens to those nerves dying and re-growing is useful [to me, at least] when coping with any of those set-backs.
I wish I could say that at times the 'status quo' is a good thing? But, truly it is! The pains or numbness may change, but it's going to be there in various ways. Sometimes you won't notice any of these changes, they are usually subtle...but the good ones can and DO HAPPEN! I hope truly that this helps ease your fears to a degree. Hugs and hope! - j