I agree, first of all the unknown is so tough i think.... My mind can't stop thinking or trying to figure out what the heck this whole thing could be.. I can never turn off my investigative side into all of this mess..
Second of all - it is hard I think especially in neurology with everything is so subjective to the examiner - one neuro would tell my I have diminished reflexes, the other would say they are brisk.. one would say I am weak, the other would say "it's all anxiety" haha.. it is SOOO frustrating!! I think I saw 4 or 5 neuros before going to the neuromuscular clinic at the university,.. and then saw 2 at my first appointment and when I was admitted might have seen 8-10 more!!! NONE of them could figure it out.. but thankfully after months and months they did admit me when I crashed and try IVIG..
I was also a very active person (and also a dancer for 15 years)!! had been a high risk pregnancy for 2 years (had babies back to back).. and was thrilled to be able to "get my life back" and get back to running and working out.. ha.. joke was on me I guess.. It is hard when I think about taking the kids hiking, skiing etc (I was also a surfer.. but would be afraid I would drown at this point).. so I have no idea if I will be able to participate with the kids in these things.. and it breaks my heart, it is so hard just not knownig, or fearing the worst.. but
I was so sick, all I could do is walk a few steps and would have to lie on the floor, couldn't hold silverware, my kids etc.. No matter how hard I tried, I coudlnt function much at all.. IVIG changed all of that.. I am still a long way from what used to be normal, and am just thankful for this new normal (After a Dr telling me it could be ALS.. I am VERY VERY thankful each day that I am better off than if that is what I had.. )..
I hope you find some answers, and they try some treatments on you.. it is rough to not know, but to also be told it could be in your head.. as if anyone wants to spend my free time at a Dr's office being poked and prodded! Ick!