Well today’s the day I started my journey into the great unknown. I will be honest, I had no idea what to really expect as I am relatively new to this MS malarkey! I was only diagnosed in May 2018.
Sure I had all the literature and the email address of the research nurse, but did it all sink in? Do I like surprises? Or was I simply fearless? The answer to all of these is sadly no. I read the information they sent and believe me, its like war and peace! But I suppose I was so busy putting on a brave face to family, friends and work colleagues that I kind of ignored it all until this morning.
Anyway, lets get on with the day itself! The worst part of the day for me, was a toss up between trying to get onto the car park at Salford Royal or having needles. I am not ashamed to say that I am terrified of needles and have been known to have panic attacks and pass out in the past!
When I arrived in the research building I was greeted by the amazing, friendly and funny staff that work there, its like I have known them for years. I topped up my caffeine levels with a quick coffee before being taken through into the room.
This is were the fun begins, I will keep it as short as I can because it seems like a lot of hassle but honestly wasn’t too bad.
- 25m walking test, Peg test, math test, symbol test (all the usual for us MS warriors)
- Then we move onto a quick physical, where my glands were checked, blood pressure, breathing, etc. (again nothing to taxing)
- ECG (lots of sticky bits attached to your chest, hands and feet and they monitor your heart)
- Cannula inserted and bloods taken (Had to try twice, because I have tiny veins that hide as soon as someone mentions needles)
- Neurological assessment by my treating neurologist. (Who may I add is really funny and puts you at ease)
- Steroid IV for an hour (I was told its the same as what we have during a relapse but a lower dose)
- Oral Antihistamine
- Trial treatment (or placebo – its a blind study) lasting 4 hours! That’s 4 hours of boredom, I wont lie! But, on a positive note it only stung a little bit and was only cold at first.
- During the 4 hour treatment infusion I had another neurological assessment by a different neurologist (same as the last one, eye sight, poking, prodding, using the tuning fork and testing my sensations and balance)
- Cannula taken out – god, I hate that bit.
- After the infusion I had to hang around for an hour to be monitored, however I had a little wander outside for some fresh air (a smoke really, naughty I know but I felt I deserved it)
- During the 1 hour monitoring I was given pregnancy tests (I am not supposed to get pregnant and finally have an excuse that my mum will except for me not wanting kiddies, yippee!)
- I was also given the tablets for a medicine already on the market (or placebo tablets – remember its a blind study)
- Another ECG
- More blood tests – from a different vein as they cant take blood from a vein they have used to put the medication in.
- Then I was free to leave after approximately 7 hours at the hospital
I know it sounds like a lot, but honestly it wasn’t that bad and apart from a head ache during the treatment I was ok. I didn’t even cry having 3 different needles in me which I am proud of!
I was kept entertained by the other half, the crazy, lovely and caring nurses who offered us food, coffee and many a laugh throughout the day!
So all in all, not a bad day really, better than I suppose I expected! Back there again tomorrow for another physical and more bloods, but then I have a week off from the hospital!