“Nothing is a waste of time if you use the experience wisely.” -Rodin

My world is in a topsy-turvy turmoil. I have sat down to write this blog at leave 5 times this week, and found myself sitting in a daze, stunned, not knowing what to write…speechless. (Believe me – that’s not a common thing, as family and friends would tell you! 🙂 You see, this week has been a WTF (What the F@%k?) week. I am talking the unknown turmoil of rough waters….

On Tuesday, I went in to the hospital for a much anticipated and awaited seizure clinic appointment, where I would work with a new team of neurologists to determine how to handle my seizures. I expected to hear that I had a-typical MS, and that seizures were a part of my life now, and information about how to cope and manage. What I did not expect was to hear that they are not convinced that I have MS, or that I have “just” MS; that in their view my brain scan is not the brain scan of a typical MS patient, nor are my symptoms.

Now, some of you may remember I went through something similar back on 2007, when a new neurologist said that he thought I had a brain tumour, not MS. I went through more testing, including a lumbar puncture. The results showing the banding results seen in MS patients – the 2007 conclusion: I do have MS, but it is a-typical. So I figured the case was closed on that aspect of my file.

So, this past week, when I asked about the lumbar puncture test which conclusively said I have MS, the new team said they don’t know. I may have MS and something more. I may have something other than MS – there may be other things that cause the same banding signal. They mentioned other possibilities, including a rare genetic mutation disorder called neurofibromatosis (a disorder in which, basically, the body gene that stops tumour growth malfunctions and causes tumour growth along nerves). They asked for a tons of family history…including what lead to my mother’s MS diagnosis and her health. I gotta say, I did not see this coming at all. And when my sister and I googled neurofibromatosis and looked back at our personal health histories and at our maternal family health histories…well, chills rolled down my spine. Could I be misdiagnosed? Could my mother have been mis-diagnosed? Could my sister be un-diagnosed? What could this mean for my kids?

Wow. OK. So now what? Wa-huh?!?!

Well – my case file is “utterly fascinating and complicated”, and now they are submitting my file to the local “house-like” medical research team to figure out the next steps…including diagnosis. And the temporal lobe “lesion/tumour” thing is classic of a seizure causing temporal lobe-epilepsy set-up. So they are aggressively tackling my seizures with medication increases, with the goal of stopping them. That’s a good thing! (Though adjusting to the new doses gives me headaches and nausea, so it’s not all sunshine and roses yet! )

It took me a few days to process the information, and the possible outcomes – some tears of frustration, some anger, some melancholy…and now, my morbid sense of humour is coming back. My bro-in-law and I just joked about how lucky he is to have such an utterly fascinating and complicated sister-in-law, and he commented back that he always knew what a special headcase I am! Thank gawd for humour, friends, and family!

So stay tuned on the next leg of my new journey. I think I will call it The WTF Journey of 2011… Join me for the ride, won’t you? We may all learn something along the way!

“Each time we face a fear, we gain strength, courage, and confidence in the doing.” -Unknown

Namaste
Carolyne

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