As mentioned in a previous blog “The Arrival of the Red Herring”, I was given an appointment at the Lyell McEwin hospital to see a neurologist. The initial appointment was daunting as my head was still trying to process this potential MS diagnosis, and to be perfectly honest I was really scared. There are, as there are with many autoimmune diseases a few classifications of MS and none of them looked like fun to me, so in this instance I believe that I had every right to be freaking out at the possibility of how my life could be impacted by this.
The neurologist was in the out-patients clinic, and was clearly heavily booked for the day, he also had the additional stress of a medical student to provide supervision for whilst she ran the preliminary tests. His bedside manner was abrupt, and it took many years for him to eventually come across as medium warm, but we got there eventually and can now hold a few minutes of normal conversation prior to being ushered out the door for another year.
When he looked at my initial MRI, he stated that I had not only had a demyelinating attack but that I had also has some damage to my brain that would have occurred in utero, he then asked if my mother had been unwell during the pregnancy, and as I have not seen my mother for some years at this point, I was unable to confirm or deny at the appointment or since.
As I did not fit the current McDonald criteria for a MS diagnosis, I was sent to go and have other testing to see if that revealed any other MS related symptoms, that included having a spinal tap to collect fluid to check for bands in that. The very thought of a spinal tap was enough to freak me out due to having had a bad experience with a planned C section epidural in 1993, this was only adding to my stress and fear of what was to become of me.
After exhausting all tests possible the neurologist sent me to one of his colleagues for a second opinion, after reviewing all the medical evidence she classified me as high-risk clinically isolated syndrome, and thankfully to this day I have not had any further progression to change that classification.
The Red Herring caused a major detour of roughly 4 years, but had I not been seeing the neurologist I may never have been sent back for another sleep study followed by a MSLT to receive the narcolepsy diagnosis, which only occurred due to my having tried Modafinil and had as a result experienced some improvement to my excessive daytime sleepiness.
To end this post on a positive note I thought that I would share my recent news; I am no longer required to have a yearly MRI and my neurologist was so happy with my progress in the past year that he has released me from his clinic, hooray for that!
Bye for now