Saturday, 28 December 2013

Week 68

hope you all, like me had a very merry Christmas. I don't know about you, but I'm glad it's all over now. What do you mean it's still Christmas? 

My Gilenya never turned up the other day. It was due last Monday, which isn't a problem as I always have a two week surplus when my bi-monthly delivery arrives. I usually get 56 tablets, but last month they sent me just a month's supply with a delivery schedule showing my deliveries a month apart (4 weeks to be precise). The system never got updated, so although the letter and the amount of meds with it said otherwise, they thought I was still on a two monthly delivery schedule. It's all sorted now though. They delivered some more on Christmas Eve. My God, that was boring, wasn't it? Sorry. 

I shared my mobility scooter escapades with you the other week. Since then, I have been given the 'marvellous' news that my wheels are a write off.  " Bollocks!", I replied to my phone when given the news. I have, however, got a happy ending to the story. The owner of the shop that had my now deceased scooter offered to sell me one of theirs for £400. I went to have a look and it is the same make as the one that has gone to silicon heaven. It is bigger, has a greater battery life and is MUCH more comfortable than its predecessor. It is second hand - hence its ridiculously cheap price tag, but it has hardly been used. No tread has worn on the tyres, and if you were to buy one brand new, it would set you back £2000. Having to shell out four hundred quid that side of Christmas certainly wasn't  ideal, but what a bargain! I'm well chuffed. 

My illness seems pretty stable at present. A few niggling issues, but there always is, eh?

The fact that I wasn't given the secondary progressive diagnosis means they won't be withdrawing Gilenya just yet. 

Have a very merry new year, all. I will be. 


Friday, 20 December 2013

Week 67

had a clinic appointment with my consultant today (yesterday if you're reading this today. Assuming today is Friday, that is) I think I'll start again...

I had a clinic appointment with my consultant during the week. His name is Professor Giovannoni, and he's a part of the Barts and the London  school of Medicine and Dentistry. 

I was expecting to get my official diagnosis of secondary progressive Multiple sclerosis (SPMS) and subsequently have Gilenya whipped away from me as it isn't considered to be cost effective to SPMSers. I wasn't phased at the thought of this. I've been expecting the diagnosis for 5 or 6 years now. Seriously, that's how long my MS has been progressing now, with the odd relapse here and there. 'Progressively Relapsing' I got told a while back. That's a new one, eh?

I was going to ask him about getting on the Laquinimod trial for people that are SPMS or maybe get some Novantrone (Mitroxantrone), which has been given to people who are borderline secondary progressive, but without that diagnosis, it was pointless asking. I still did though. 

What to do now then? I did what I always do when I see him, I asked him for some Campath! It's name had been changed to Alemtuzumab after a few tweaks and it has since been rebranded as Lemtrada since it got its Food and Drug Agency (FDA) (for the US) and European Medical Licence (EMA) licences. Despite its licence, the National Institute of Health and Care Excellence (NICE) won't touch it with a barge pole over the cost. This decision is under appeal. That means I can't have that either. 

 All this means that until NICE and Genzyme (the makers of Campath) agree on a more suitable price; or until my diagnosis of 'Highly Active Progressively Ralapsing Borderline Secondary Progressive Multiple Sclerosis' turns into 'full blown SPMS, I shall continue to take Gilenya and write this weekly rubbish.

As I've been enjoying acronyms this week, I've got one more for you before I go: HAPRBSPMS. That's my very own self titled MS diagnosis from above. It's what they have told me over the years. Are youHAPRBSPMS too?

Happy Christmas, everyone. 


Friday, 13 December 2013

Week 66

spent the whole of last week's blog going on about my mobility scooter adventures that I never actually mentioned the Gilenya related news that I wanted to share with you. But that is me, I'm afraid. 

Had I not bored you with my self indulgent story of crashes etc, I would've told you of the visual fields test they did on my eye. For those that don't know, a visual fields test is when they get you to look into this white box and stare at a black dot. Then very small lights will flash intermittently at different places outside of the black dot. Every time you see a light, you push a button on the clicker thing they give you to hold. 

The lights can be a distance from the black dot, so it's checking how far you can see out of the 'corner of your eye'. I never really understood that saying. Your eyes are spherical, circles don't have corners! Anyway, who cares, back to to point, you repeat the test with the other eye and the results will show what lights you missed and the ones you saw. That is your visual field. 

Mine is okay. My left eye isn't as good as my right eye, but I know that anyway from whenever I do that optician's eye chart, where you read through a row of letters that decreases in size every time you you go to the line beneath. 

They then put in some eye drops to make my pupils dilate so they can look into my macula - a spot in the centre of the retina. Because of the Gilenya treatment, they check it for swelling and whilst they're there, they check the optic nerve for signs of disease activity. They didn't find any lesions or swelling on the nerve and my macula is normal too. 

The consultant also informed me that I don't need glasses either. This news leaves me content that the issues I was experiencing with my eyes in the summer haven't left any permanent damage. Dan likes this. 

If you're taking Gilenya, or considering switching to the medication, I would advise you to keep an eye on your vision (yeah, I know) and report any visual disturbances you may encounter. 

Getting cold in the UK. Keep warm people. 


Friday, 6 December 2013

Week 65

So what happened to last week's blog, you (probably don't) want to know? Well, I fell off my mobility scooter, head butted the road and gave myself concussion. When I got home, I was too confused to work out how to open my front door (that simple task took me 5 minutes). I could hardly put a coherent sentence together, let alone write a blog! I had flashing lights in front of my eyes anyway, so I have the perfect excuse for not bothering!

I had been to my local mobility shop to order a part I needed for my scooter. Afterwards I made my way back home. I wasn't 20 feet from the shop front door and my scooter just stopped. I had charged the battery the previous night, so I guessed it was something pretty serious. How's that for luck though? Of all the places to break down, it is directly outside a shop that fixes and sells mobility scooters. I think you'll agree, this story has a whiff of irony to it. Is it whiff or wiff? I've never written that word before. Probably should've just said 'smells of irony' and saved all this drivel. I still could, I only have to delete all this as far as the word 'it' and just be done with. I more than likely won't though. I quite like to share my thought processes at the time I am writing. Note to self: You're typing, not writing. 

Anyway, the shop very kindly loaned me one of their scooters and took my one in for repair. I carried off on my journey back home, unhappy that I had an impending bill to pay on the wrong side of Christmas, but relieved at the point that my wheels chose to stop. I had only been talking about my breakdown plans to the bloke in the shop 5 minutes previous. 

Rochford is an old town - it's practically a village - and the pavements are just as old (obviously)
I'm bombing along on the pavement and it's a bit uneven and I bump myself onto the edge of the kerb. The front wheel on the left goes over the edge and that's my lot, I tip into the road. Fortunately (expressed with sarcasm) my head broke the fall. I was shaken and concussed, but no real harm done. It's a busy road. 5 seconds either way and I would've had a head as flat as a pan...pan...panini. 

If there's a lesson to be learnt from this adventure, it's don't leave writing this till Thursday afternoon (like I am right now), oh! 

I'll talk about Gilenya next week, I promise. 

Happy weekend,