Week 72

I didn't do a blog last week because I didn't feel like I had anything new to say about Gilenya and as my blogs of late seem to me to be getting pretty repetitive anyway, I decided not to put you through the misery of reading the same recycled rubbish again. 

Over this last week though, hindsight smacked me right between the eyes as it struck me (pun intended) that there is something I should have been sharing. 

One of the improvements I observed after starting Gilenya was a massive improvement in my fatigue. It was after 3-4 months on the treatment that it happened. It's stayed this way too - with the odd fatigued day or two, here and there. If I had a busy day (by my standards), I would get the fatigue of old, but a lay down on the bed for half an hour or so was often all it took for the 'head mist" and muscle tiredness to subside. 

I have already mentioned that fatigue seems to be creeping back on slightly more and more frequent occasions. Well, I feel like I've had it practically every day for the last two weeks. Not the best start to the new year, eh? I fall asleep after lunch practically every day. Before Gilenya, I used to go and sleep on the bed for a couple of hours after lunch every day and even then I'd still feel pretty crap the rest of the afternoon, until finally coming round in the evening. It would often feel like I've wasted the day. 

Getting out of bed in the morning is becoming increasingly difficult. I have to set my alarm for nine o'clock and I'm hitting snooze for an hour. Today (Wednesday), I didn't get out of bed till midday!

When I look back, I could say it's been on the up since Christmas. Christmas is traditionally a busy time of year, as any parent to two young children will agree. Christmas is the time of year were we all eat too much and drink too much too. Come on, admit it, you're nodding in agreement, aren't you. Obviously I've got no right to categorise everybody this way by saying 'we all'  but I bet there's quite a few nodders out there. 

So this blog finishes with questions, not answers, I'm afraid. Is my fatigue on its way back? Does this mean the Gilenya is losing its effectiveness? Has my body built up neutralising antibodies towards Gilenya? Or is it some kind of MS 'hangover' from the  food and alcohol indulgences over the Christmas period? Who knows? 

My life is a bit stressful at present, and I know that isn't helping. 

I apologise about such a melancholic diary entry, but this blog isn't just about the good things about Gilenya. It is about a bloke who takes the drug and how he feels, good and bad. 

Have fun this weekend,

Dan 

Week 70

I took over the Shift MS Twitter account last weekend. It was a very enjoyable experience; it was good fun and I met some MSers that I can have a laugh with. When I say 'met', you know what I mean. I have been asked if I would like to do it again in a few months. Of course I said yes. 

The Gilenya is ticking over okay. There really isn't any change from last week, so this blog is going to be a lot shorter than it usually is. I like to keep them short and sweet because, firstly, there isn't much change in what the benefits or problems (none) I get from the treatment on a week by week basis; I feel like they are pretty repetitive as it is - read one of my blogs and you've read them all! Secondly, I believe that if a blog goes on too much, the reader will lose interest. Let's be honest here, I doubt anyone is still reading this by this point. If I was reading this, I'm quite sure I would've given it the sack by now. 

I do read quite a few other blogs. Mainly ones by people with MS. I find it interesting what other people say and think, but I do have a low concentration span, so I've a habit of skimming through them after the first couple of pages. It's not my fault, I've got MS!

All jokes aside, I never had this problem before I had this illness. I used to work in London, and it's an hour's train ride away from the Costa del Southend, so when I wasn't sleeping, I was reading. I'd get through a book in a week, if not more if I had one I couldn't put down. 

The book I'm reading at the moment, I've been reading for 3 or 4 months now. Seriously. I just cannot pick it up. It would be a really good book too. It isn't anything to do with the author, or the story either. It was the same with the last 2 books I read too. It must be a year since I read an entire book. Ha, listen to me, I make it sound like I'm trying to move mountains, or something. 

I resolved to stop falling over and to stop swearing on New Year's Eve. I've done both twice in the  9 days since I declared my abstinence. I'm relatively content with these stats. I've got an excuse for the profanities. Actually I haven't, I've got a reason though. My football team has conceded 11 goals in a two game period that has seen us knocked out of two cup competitions. Bollocks! That doesn't count because I didn't say it out loud. 

The falls can't be helped, but I can make sure to listen to my body more. Both falls could've been avoided in all honesty. I feel my legs weak, I'm low on energy, so I tell myself 'I'll just finish doing (insert the chore of your choice here) and I'll sit down'. This is when I just slump to the floor and that's when the aggravation starts. Now I've stopped that and when my legs tell me to stop, I don't tell them "In a minute", I stop. 

Happy Friday, people. 

Dan

Week 69

Happy new year to one and all. I hope you saw in the dawn of the year in in the way that you wanted. 

I did, I spent the evening with wifey, the children and a large bottle of Vodka. Yes, I did drink far too much. No I didn't fall over. Not once. That itself is a good start to 2014, let's see how long I can keep it up. To be honest, I'll have probably fallen over by the time I publish this on Friday. I've got a whole 2 days to swerve the carpet till then. 

After my diary last week, I had a few tweets asking me about why a diagnosis of secondary progressive MS (SPMS) can affect an MSers eligibility for Gilenya? I probably didn't explain it properly, but in the UK, Gilenya is used as a second line treatment for people with relapsing remitting MS (RRMS). 

Gilenya's primary function is to reduce the amount and severity of relapses. In doing this, it is hoped that this will delay the transition to SPMS. When you officially get diagnosed with SPMS it is because you have stopped relapsing and your body is in decline. Your disability is slowly progressing. 

The scientists are pretty much in agreement that Gilenya doesn't help with the actual progression itself. Therefore it is pointless giving a treatment that at £41 per tablet, and approximately £15,000 per year to somebody who has stopped having relapses. It sounds harsh, but I can understand the decision. 

I have been given the Shift MS Twitter account to use and abuse for the weekend. Think I'll use it to 'shamelessly' advertise my blog...

NO FALLS!

Have a good one,

Dan 

Week 68

I 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. 

Dan

Week 67

I 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. 

Dan

Week 66

I 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. 

Dan

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,

Dan