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.

Tuesday, October 12, 2010

A Fresh Start (for my blog)

I've been feeling particularly frustrated with doctors (two, in particular) the past couple of days, so I thought I'd cheer myself up by sprucing up my blog. Unfortunately, my brain fog is pretty thick right now, so I've made a few mistakes.

In trying to rearrange some the layout of my blog, I accidentally deleted some things I didn't mean to delete. If I deleted your blog (or if you blog about ME/CFS or epilepsy and it's not listed), please respond to this post with your blog address.

If you notice anything else that's missing, just let me know. Thanks!

Sunday, October 10, 2010

I Think I've Won the Genetic Lottery

I feel like I'm watching my own life pass me by. My last post was in July. Suddenly it's October, and I'm about to turn 32.

I'm not a statistician, but the odds of having both CFIDS and epilepsy have got to be slim to none. Add in the fact that I have some not-so-common conditions (like thalassemia minor and unusual drug allergies) in addition to a combination of fairly common conditions (like PCOS and asthma), I am pretty sure it's safe to say I'm a medical oddity.

I think I must have won the genetic lottery.

This past year has been one of the most challenging of my life. If you're a regular reader, you'll notice I've modified the title of my blog. I've added my epilepsy diagnosis. The past year has been consumed with the exhausting task of trying (and failing) to find the correct combination of medications that works for me.

So far, no success.

I think that part of what is making everything so complicated is my CFIDS. My immune system simply does not seem to function correctly, so I don't react to many medications the way I'm supposed to. It's my dumb immune system that almost got me killed in May when I had an anaphylactic reaction to Trileptal -- an epilepsy medication. I'm still not ready to write about the entire experience, but you can probably figure out it was traumatic for me.

More recently, I reached toxic levels of one of the epilepsy medications I'm on. I started feeling extremely sick (more than usual) every day and would often wake up with my eyes rolling around with my head shaking. It was not pretty. We've backed off that dose, and I'm doing a little better (I think), but I'm still exhausted.

I have so much to say, but so little mental energy. Maybe I'll write another post in December...though I hope to write something sooner! ;)