I feel like so much has happened in such a short period of time! It has definitely been a roller coaster since my last post - but I am so happy to say that this post will end with some wonderfully delightful news.
A couple of weeks ago I finally saw my Epileptic Neurologist, which as I previously mentioned, has been a neurologist of mine since I was about 24 years old. This didn't go as smoothly as I had hoped. I found that either she wasn't prepared to see me or she had a lot of judgments about the diagnosis that my other neurologist has given me. This is not uncommon in Medicine and this is something I feel I need to briefly touch on because I feel that what happened at this meeting is why so many people have been so perplexed, confused, upset, angry, and had many judgments about what and "if" anything is really wrong with me.
Medicine is clearly not always a concrete science as much as we desire it to be. When we go to see a doctor we hope that they have all of the answers in the world, and we almost expect them to be superhuman. We forget that these individuals have emotions, judgments, and competitive natures about themselves. When you become a patient in a specialty such as neurology, the judgments between Physicians amongst their sub-specialties can be very overwhelming. I have been a part of this for years...the back and forth, and tug of war, the school yard battle. However, many people do not know what physicians are talking about and therefore what I have been through and the laundry list of diagnosis and opinions has been mind boggling to say the least. I have to remind myself that my Physicians are human, and they try their best to keep their opinions to a dull roar, however, they really each believe they are right and that they each have my best interest at heart. It has been my job in the end as the patient to encourage communication amongst my medical team - to help remind them that I AM HUMAN TOO.
When I arrived at my appointment with my epileptic neurologist, the appointment quickly became overwhelming and I felt like everything was unraveling again. I felt like the consistency of the past six months was quickly flying out the window and this neurologist was turning everything upside down because she did not believe that I could possibly have a rare neurological disease such as Neuro-Behcets. She asked me to explain how my other neurologist came to this conclusion. There I was trying to explain an MRI scan....and people wonder why I read up on my illness and always try to understand the medical terms....you never know when there will be a pop quiz. Here is the battle, an epileptic neurologist is not trained to diagnosis white matter diseases and a white matter disease neurologist is not trained to diagnosis epilepsy....confused yet??? In the end of the appointment, I felt deflated and a bit like I was losing faith in my entire team because I felt that my epileptic neuro should have read more into my chart, and should have reviewed my scans more, but maybe she hadn't been given the information - either way there was a break in the communication and I am not the one that should have be filling in the blanks. Shortly after that appointment I received my Notice of Cancellation from ICBC notifying me that I am to surrender my drivers license due to my seizure on September 24, 2011. All in all, this was a low point....
Now, on to the fabulous news. I just got back from a week in Fort St. John where my husband and I are relocating to at the beginning of April. We are thrilled with what opportunities this move will bring us. I will of course still be flying down to the coast for medical treatment, and some family time :). Today I followed up with my main neurologist that treats my disease. I first explained to her how I felt after my appointment with my epileptic neurologist. I told her that I did not want to go down the route of having a million different opinions again, I asked that if the medications are working, then why couldn't I just leave everything as is? Why do I have to know if my seizures are epileptic or non-epileptic? She said she understood that I felt overwhelmed by the appointment but the importance is to do with treatment. She said that if a patient with Neuro-behcets is having an epileptic seizure that is uncontrollable then a coma will be induced, if it is non-epileptic in nature then no coma will be induced. She said that it is important that I trust the process. I encourage other patients who find themselves in similar situations as myself, with multiple physicians and multiple opinions to speak up! Tell them when you feel frustrated by the conflicting opinions, and the bashing of sub-specialties. This is your right, you as the patient are not the go-between. You have enough to deal with, it is there responsibility to aid you through this process. When I explained this to my neurologist, she was happy to write another letter to my epileptic neurologist explaining again what role she needed her to play and that was to asses epilepsy vs. non-epilepsy.
The most wonderful news of the day was that after just getting my Notice of Cancellation, I will be getting my drivers license reinstated!!!!! I am doing very well right now and overall my neurologist is very pleased with my progress and with my overall health! I was so happy to hear this :) She said that she would like me to rest up for a few more months and then I can try to find employment! I know for some of you that sounds funny as to why I would find that exciting but that is thrilling for me!!!!! I will have my follow up MRI in two months so there might be even more fantastic news to come :) This was a day of great moments!
I am including a photo from my wedding day that just sums up my happiness that I am feeling today!