Wednesday, December 9, 2009

The Whole Story

I got some bittersweet news the other day. I've been holding onto this story for awhile. I wasn't quite sure that I wanted the world to know my "stuff". More importantly, I want to go on living my life as usual, as opposed to "someone with..."

Well, let me back up and give you the whole story....

The day after I had Lillian, and while still in the hospital, I had what we are calling "an episode". I was laying in the hospital bed with a room full of visitors including friends and family (10 people to be exact), and I was trying to nurse Lillian. As I was holding her, my fingers started to feel numb. I thought "hmm, this is weird, I must have pinched a nerve or something". Then, my whole hand went numb. I immediately called Chris over to take the baby as I felt the numbness move up my arm. I still thought that it might have something to do with an IV that was in that arm earlier in the day. The numbness eventually moved through my arm into my shoulder and head, and down my torso and legs...all the way to my toes. My entire right side of my body went numb. When I started to talk, I could feel the right side of my mouth droopping. I pushed the button to call the nurse, and I could tell by the look on her face that she was concerned. She went to call the resident on duty. Then, as quickly as it started, I began to regain feeling in my fingers..then my hands and arms and so on. The entire "episode" lasted less than 5 minutes, but was pretty scary.

Over the course of the next day, I went through a few tests (CT Scan, EKG, EEG, Ultrasound, and MRI). The results all seemed indicative of MS (Multiple Sclerosis). So, while we should have been celebrating and taking Lillian home, instead, we had a bit of a damper put on our day.

Throughout this time, I was also telling everyone and reminding them of my family history with CADASIL.

As we left the hospital with the news that I probably had MS, I scheduled a follow up visit to the neurologist a few weeks later. The result of the follow up visit left me feeling a little discouraged, as the Dr. was pretty certain that I had MS and were ready to start my daily doses of protein shots. I once again reminded them of my family and CADASIL. I received a call a couple of days later requesting a genetic blood test and a Lumbar Puncture (spinal tap (which was not at all as painful as I expected)). The diagnosis was still MS, but the Dr's wanted to be sure to rule out everything.

Throughout this all, Chris and I decided to tell only some friends and immediate family. We did not want it to take over our lives, and we definitely did not want people always asking questions (especially when we didn't have answers). If you were not one of the people that originally heard the news, then I'm sorry...we were just attempting to rid our lives of any undue stress.

So, fast forward to December 8 (about 4 1/2 months after my initial "episode"), and I finally had another meeting with my Dr. The good news is that I don't have MS. The bad news is that I do have CADASIL.

Unfortunately, CADASIL does not have a "cure". I can potentially lower my risk by eliminating common risk factors in strokes, such as high blood pressure, high cholesterol and diabetes. I also have the pleasure of taking a baby aspirin everyday. I am choosing the grape flavor;)

While I was prepared for CADASIL, and am relieved that I don't have MS, I am still scared. I'm not so much scared for myself, but for my sweet, perfect little girls who now have a 50% chance of having CADASIL.

Well, I wanted to put this out there. I wanted it to be known, but I don't want to talk about it all of the time. This is one part of me, but does not define me.