Why, why, whine

 When I was little, I read the dictionary. I wanted to know every word there was to know and what each word meant. That way, there could be no surprises and the world would be clearly defined. Yeah, I was the kind of kid that liked math too. 1+1 always equaled 2.

 Nice.

Fast-forward 40 years and here I am with an undefinable disease. That is the worst part of MS for me. I'm like a 3-year-old when I visit my neurologist with my "Why, why, why". I want her to tell me what nerve pathways are being affected, show me the diagram and then trace it back to the specific lesion. Why do I get burning and electrical sensations in my arm, leg and feet when there isn't a single nerve pathway that runs through all of those? Why are all my issues only on my left side when my spinal lesions are also on the left side (aren't things flip-flopped?)? Why do I have all these new symptoms in the past two years when I haven't had an enhancing new lesion in more than two years? Doesn't new symptom = new lesion?

I feel a little crazed at all the questions that keep running through my mind with no way to get them answered. Where is the dictionary of MS? I need those words and definitions to sum up what's going on and to take the surprises away. I need this MS world defined. But I know this won't happen in my lifetime.

I think I give my neurologist an inferiority complex. I unfairly come up with new unanswerable questions each visit. I know there aren't answers but I have to ask them anyway. Maybe she knows. Maybe another patient of hers has experienced something similar.  Maybe she will have the answer after all. I keep probing for answers, thinking that if I ask in just the right way or describe a symptom more thoroughly that it will jog her into saying "Aha! So that's what's going on. Why didn't you say that sooner?" And then she'll pull out a handy pamphlet that explains in 1-2-3 bullet points on how my MS came about and how it will be fixed.

The reality is that instead of a dictionary, I've been given an "Alice in Wonderland" sort of book. My world is topsy-turvy and full of little bottles of pills that say "Eat Me." I run, run, run as fast as I can only to find that I've lost ground. (To get anywhere in Wonderland, after all, you have to run twice as fast as you can to get anywhere.) I talk to my doctor and out of her mouth comes something like " 'Twas brillig, and the slithy toves did gyre and gimble in the wade." At least, what I hear is no more helpful than that wild piece of Lewis Carroll that I loved in my childhood.

People with MS often share stories with each other about how, when seeking a diagnosis, they felt sort of crazy and hypochondriacal. This disease makes no sense at all. Last week, after an alarming increase of symptoms grew to the point that I figured my central nervous system must be riddled with new lesions, I had a new set of MRIs done. The good news was that there were no new lesions. The bad news is I'm feeling crazy and hypochondrical. So, what's with all these new symptoms then? How can this happen without new lesions?