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Thursday, 23 February 2012

Fielding Questions....

Do you remember when you were younger and you had that first experience at the doctor where you had to wait for test results? I do. I remember my mom telling me something that never really made sense until this point in my life and that is, the Doctor WILL call you if there is something wrong. If there isn't...don't expect a call; my mom's favorite line, "no news is good news!!!". Very true!!! I first learned how this really works when I went through my initial potential "MS" diagnosis. When my epileptic neurologist felt it was necessary to send me forward to the MS clinic, I had an appointment there within a couple of weeks. Once I started going through the process, my neurologists would phone me to check in and see how I was doing and to follow up with me on results. This was scary, because I knew that this meant that we were dealing with something that this specialist felt was urgent enough for them to speak with me at home. As time has gone on though, I began to become a regular patient again. I would get bumped for more urgent patients and overall I went back to the real world of they will call you if something is wrong.

Currently as you know I am seeing what seems like the entire medical field in Vancouver, but I have been waiting to get back into see my Epileptic neurologist who I originally saw back when I was 24 years old. My other neurologist that manages my Neuro-behcets, had made the re-referral back to this neurologist at the end of December. I was a little surprised when I was sent a letter in January stating that my appointment would be June 28th, 2012, as I have been a previous patient of this particular neurologist. However, remember no news is good news, and a lack of urgency can be a VERY good thing. One thing to add is that every sub-specialty within neurology functions differently in Vancouver. At the epileptic unit they mail you your appointments, they DO NOT call you...very bizarre, but that is how they like to roll! Do not question the receptionist...she really doesn't like that question!

So at the beginning of February I had my second set of EEG's since my seizure on my wedding night (one sleep deprived and one normal). A couple of days after my results would have been received by my main Neurologist, I got a new letter in the mail from the Epileptic Unit that my appointment had been moved to April 23rd, 2012. I decided I should maybe call them, just to make sure that there wasn't a mistake. What I learned is that I need to see my epileptic neurologist as soon as possible. It shows that my main Neurologist is actively reviewing my file and case and staying on top of it and proceeded in a direction that she felt was the best, when she saw my initial fixed appointment of June 28, 2012. The receptionist at the epileptic unit mentioned how I can help out even more by calling every day between 2-2:30pm to try to get a cancellation the next day. I was trying to figure out who this was helping...pretty sure it is helping her out but let's be honest here, I don't exactly have a full schedule... so to field a common question I get asked of  "how do you really know something is wrong? or When do you know something is wrong?" - you will know. Physicians will make it clear and will make sure that they see you, and if they don't need to see you then sit back and relax.

So on Tuesday, I was advised to try and see my epileptic neurologist at 9am at VGH. I was asked to call at 9am to see if I could make the 9:15 appointment as the 1st patient was unconfirmed new patient. So Jason and I arrived at VGH at 9 and I called only to realized that the phone lines don't open until 10am...I had a brief, "are you serious?" moment, and then just went to the neurology floor, and spoke to the receptionist. She told me to wait and see what happened. The first patient showed, and then the receptionist told me to come back again at 10am and try again...I am really patient, but this was really starting to try my patience. I came back and at this point my Neurologist realized who was and what was going on. When the 10:15 appointment showed up, and the receptionist asked me in front of a room full of people why I "actually" needed to see the neurologist prior to summer, (implying that I was controlling this situation), the other receptionist came out and said my neurologist would see me Friday at 10am. What a runaround! I will say that this is not the normal situation, I have actually never had this happen - so please don't think this is Neurology's normal practice, I think this was just someone having a bad moment! Haha.

Part of the reason that things have been moving in this direction is because I have been having continual headaches, which have been rather uncomfortable. This isn't uncommon with this disease, and I don't really ever like to complain about the symptoms of the disease but it has started to impact getting through the day. The headaches cause dizziness and a sensitivity to light and seem to feel worse if I lie down, which you would think would make it better. I don't want this blog to be too depressing - but rather factual, and these are still the facts. Well I will post more after I see the neurologist on Friday :)

I hope everyone is having a healthy and happy week!

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