A happy new year to all my blog followers, I hope you all had a good time this Christmas and new year in 2017, and I hope 2018 is a good one for you all.
Sorry I didn’t post anything in 2017 but last year was a rollercoaster of a time for me. I don’t know where to start as it has been full on every month. The year started with tests and ended with more.
After finally being referred to a neurologist re what we were told was eds (extreme daytime sleeping) I had a Polysomnography test- this is an over night sleep study, where electrodes are place on the head to accurately assess whether the patient is asleep and what stage of sleep they are in. Followed the next day, by a Multi sleep latency test- this is a test which measures how long it takes you to fall asleep during the day. I was asked every 2 hours from the test being at 9am and the last test being 3pm to try to fall asleep, and a specialist analysed how quickly and easily I fell asleep.
The diagnosis for these tests were secondary narcolepsy and cataplexy.
Secondary Narcolepsy- occurs with injury to a deep part of the brain called the hypothalamus. This is a rare long term brain disorder that causes a person to suddenly fall asleep at inappropriate times. The brain is unable to regulate sleeping and waking patterns normally which results in sleep attaks (falling asleep suddenly and without warning)
Cataplexy- this is a temporary loss of muscle control resulting in weakness and possible collapse, often in response to emotion such as laughter and anger.
This is treatable with medication but I have yet to still find a balance with my medication for this.
I also managed last year, to do a 5K run for cancer research UK and I would also like to thank everyone who sponsored me. I managed to raise a grand total of £886. The run took me just over 1hour as I was stopping and resting. The run was from Bispham Hearts Amusement to South Pier.
I had my 6monthly MRI and MRA as usual the Brian tumour remains stable. 👐🏼
Unfortunately my Uncle Fred died at amazing age of 94. I have some amazing memories and he will never ever be forgotten.
I now have regular cognitive screening tests due to short term memory loss and hypothalamic dysfunction.
And we also finally managed to get back to Jacksonville FL to see my amazing friends and amazing Medical team at the Proton Clinic for my review appointment and to have some fun in the sun.
I ended the year with tests in December with a 24 hour blood profile this was not easy for the team on oncology as they put in 4 cannulas and all 4 failed. My bloods had to be taken every 2 hours and near enough ever time they had to do finger pricks as my veins collapsed. This was to test my cortisol levels.
This year I will do more regular blog posts sorry for the delay.