Saturday, October 30, 2010

New Neurologist Appt on Monday!

I am very excited that I was able to get an appointment with my new neurologist for Monday.

My new doc is an epilepsy specialist at an epilepsy center. On the recommendation of my local Epilepsy Foundation, I called back in September to try to get an appointment, but the earliest they could schedule me was for December. Though frustrating that I couldn't get in sooner, I took the delayed appointment as a good sign because so many people are clamoring to get in to see him.

On a whim I called the epilepsy center last week to ask if there was any way they could call me in for an earlier appointment if anyone happened to cancel. The woman I spoke with told me she'd be happy to put me on their list of people to call.

Well, someone cancelled their Monday appointment! And the best part is that I got the call on my birthday. :) What a great birthday present.

I have high hopes about this appointment (perhaps, too high?) because I have been experiencing growing disappointment with my current neurologist. He is not an epilepsy specialist and has more recently not been treating me with much compassion. My husband who usually accompanies me to my neuro appointments was shocked at how rudely the old neuro treated me at my last appointment.

I've been on too many epilepsy medications to count, most of which have caused (or are causing terrible side effects). I am losing my hair, my hormones are off balance, I can barely get up a flight of stairs (it's worse than usual these days), and I feel extremely weak all the way around.

The doctor didn't seem to think these things were that big of a deal. He told me to go find an endocrinologist to deal with my hormones because my case was "too complicated" for him to deal with. He then ordered a new EEG and some blood tests to try to figure out what's causing my weakness, but he basically brushed me off. In his defense, maybe he was having a bad day.

(Unfortunately, the EEG showed that I am still having seizures, and the blood tests showed abnormally high morning cortisol levels. The weirdest thing is that I still can't tell when I'm having seizures for the most part because I simply do not lose consciousness. I have plenty of brain fog, though. Did I ever mention that my old neuro said I probably don't have absence seizures? He now thinks they're simple partial.)

Either way, I'm happy to be going to an epilepsy specialist. I'll keep you updated.


Joanne said...

I hope you have a successful consultation with your new Neurologist.

Have you properly excluded Lyme Disease as a differential diagnosis? I mean by seeing a LLMD.

I see you follow a couple of blogs where people have lyme so I guess you know enough to know that the more systems affected and the multi illnesses diagnosed the greater the chance it could be lyme.

upnorth said...

It's frustrating when our issues get dismissed by Dr.s because they're complicated. I hope the speciaist is more helpful even if you don't fit neatly into a box.
The weakness can be so frustrating. Are you able pace and rest at all lately? I know it sounds strange but my (very minor) neuro symptoms sometimes improve a little with rest.