Friday, February 12, 2010

"Just Part of Having a Body"

I've been home sick for the past couple of days. Yesterday I woke up feeling awful. My mornings are seldom bad, so I knew I was in for a rough patch. I threw up this morning.

I also had my follow-up with the neurologist. I wasn't relieved that my MRI results are fine because I knew they would be. I was just hoping that the doc would be able to help me feel better. After getting me to walk heel-to-toe, he said my balance issues weren't bad and that if I saw a physical therapist he/she would just ask, "Why are you here?" I told him the balance problems weren't constant. Also, I can often walk heel-to-toe, even during periods where I tip over and have to catch myself or strain to try to keep my feet from rising from the ground. Doc doesn't know why my balance issues aren't constant. I still can't figure out what he DOES know, at least about my Dandy Walker.

He thinks I'm probably dealing with a combination of the Dandy Walker and post-viral syndrome and that my neck condition might also contribute to my disequilibrium. I'm sure my rapid heart rate plays a role too, but yeah... he said these are all just hypotheses. The problem is that it's impossible to know how much of a role each of these is playing in my current condition. Doc said symptoms are "just part of having a body." Really? Because there is no presence of disease, I am "normal." How reassuring. I'll try to think about that the next time I feel myself falling or when the pain makes me cry or when a flight of stairs exhausts me.

This is the second time I've seen the neurologist and both times he's assured me that I'm fine. I keep telling him and other doctors that I know I'm fine, but I feel awful. Doesn't that mean anything? The neurologist said for the second time that "You don't want a diagnosis because that means there's something wrong." Of course I want a diagnosis! I want an explanation for what's been making me sick for the past 8 months. I want to know when I'll get better and how I can help myself feel better. I can't get that information without a diagnosis, but anyway, there's no treatment.

Is there at least something that could help me feel better? Maybe. Time will likely heal the post-viral syndrome; doc says massage therapy could help my neck; orthotics could relieve the feet pain and perhaps support stockings could ease the swelling. I'm sure better treatment for my heart problem wouldn't hurt either. Again, it's a combination of issues, so a combination of therapies is in order, I think. At least I'll know that I'm at least trying to help myself.

Doc said to be patient, which I can do. If I'm not better by June, when I have my routine appointment with the neurosurgeon, I'll ask him for advice. Maybe he'll actually be knowledgeable about Dandy Walker syndrome. My neurologist doesn't know much and doesn't know anyone who would. That's reassuring, isn't it? At least it's nothing that requires treatment, right? At least I'm not seriously ill, right?

The doc made me feel that he didn't consider my quality of life an issue. He had this attitude like I was neurotic and just wasting his time.

Mom and Dad are very supportive. They just want me to feel better. Maybe I will! A lot of symptoms have disappeared like the confusion and bad short-term memory, so my neurologist thinks the other symptoms will improve too. I can only hope and wait! Well, I'll try other things, but I'm far too jaded to bother getting my hopes up.


  1. Your neurologist is a jerk! You are not neurotic, you are having symptoms and he is not doing his job.

    I know the frustration you are feeling, at one point I had a doctor tell me I was "medically unlucky", and act like that was my diagnosis.

    Have you tried the Dandy Walker website to locate a neurologist actually familiar with the condition? I can help you with that if you need.

    Good luck!

  2. Thanks for your reassurance that I'm not neurotic! I don't know if my neurologist is a jerk, but he's definitely insensitive.

    I'm proud of you for not settling for that ridiculous diagnosis.

    I'm going to email the American DW site to see if they can help me. Thanks for the suggestion.

  3. We are sorry to read your post to discover you are not feeling good.
    It does sound as though your neurologist was not having a good day!
    Quality of life is everything!
    We are keeping our basset paws crossed for you over here in Scotland.
    Thanks again for coming over to visit with us.
    We are very bad at the moment at keeping up!
    Martha, Bailey & Mum xxx

  4. Hey guys! Nothing cheers me up when I'm sick like a dog or two! I have my sister's shih poo here. He's the best. You two would like him.

    My doc could have been having a bad day, I guess. He wasn't mean, just being a doctor, though. You have to be firm with doctors! They can be intimidating like vets are to dogs and stubborn like dogs are to humans.

    Thanks for stopping by again and making me smile!

  5. Hey ho!
    Dr. Lea here! Your neuro was being a jerk! BUT we docs needing firmness?!?!?! Tut tut tut!!!!! Lol. Sorry your still feeling poorly Ashy-poo. Thinking of you over here in England!

  6. Aw thanks Lea bear! I'm thinking of you too!