Week 90

I said a while back that I would no longer publish a weekly blog for the sake of it, or because it's a Friday, or whatever other reason. I haven't written recently because of just that. 

When I first started taking Gilenya - nearly two years ago - it had only just had its licence renewed after it had been withdrawn because a patient died after taking a single dose. 

My consultant told me I would be one of the first people to be given the treatment since its re-issue. I knew that there were people out there that were curious about Gilenya, so I decided to record any improvements or side effects I got whilst on the medication. 

At first, I had so much to talk about, so writing a weekly blog was not a problem. However, now we are at the...er...now. There hasn't been any real noticeable changes for a long time, thus leaving me with nothing to report - not even in the month since I last wrote. 

That means I'm closing this blog down. Its usefulness has run its path and it is time to call it a day.  I have enjoyed the 'ride' and I hope it has given you an insight into what it is like to be on the medication.  Maybe it's helped you make a decision on whether to go on it, or not. For me, it's a no brainer. I take 16 tablets and vitamins per day. 17 now, including Gilenya. I haven't had a relapse in the 20 months I've been on it and I haven't endured a single side effect in that time either. Not bad, eh?

Should anything worth writing about occur, I'll be in touch. 

Enjoy your fingolimod,

Dan

Week 83

I had to get up at half past five the other morning. I can't remember the last time I got up that early. I think it was when I worked in London. I used to start at 7 o'clock  and the hour journey meant that my alarm would start going off just before five. I always needed to hit the snooze button for half an hour before I could drag myself out from my slumber. 

As this was going to be a very long day, starting with a two to three hour car journey through the London rush hour traffic - as a passenger, I have stopped driving now - I knew this would be a big test on my fatigue. 

Well it all went quite well (understatement). I got up with absolute ease. Just a couple of snooze button pressing - I know that sentence is grammatically incorrect, but I don't know how to make it right, so it's staying as it is, I'm afraid. Ha! I should've said 'presses', not 'pressing'! I'm not going to correct it though. With this blog, you get my tedious thought processes along the way. 

Anyway, after I sprung out of bed, I got through the tedious car journey and spent a tedious morning watching the tedious football team I support undertake a tedious 'open' training session, where the supporters can watch said tedious training session. It's at this point, I need to point out to any reader who must be completely mad to still be reading this drivel, that there is absolutely no way that this tedious morning's 'entertainment' was in any way my idea. Thanks, son. 

All in all the fatigue monster kept itself at bay all day, despite many opportunities to show itself. So much so, in fact, I was still wide awake when I took myself to bed at gone one in the morning. That's something like 20 hours! My fatigue is now back to its pre Christmas levels where I was able to do things like get out of bed before lunchtime without feeling like a zombie all day. 

I still get tired easily, but I'm not getting so much of the physical effects that fatigue does to my body. 

Happy Friday,

Dan

Week 82

My vitamin B capsules turned up the other day - my God they smell awful - and I'm taking 2 a day. 

I don't expect to see any improvements taking vitamin B. I'm doing it to keep my B vitamin levels as high as I can. They are also a source of folic acid, and for whatever reason, those levels dropped very low recently. 

I've been taking folic acid for nearly a month now and I don't feel dizzy  or light headed any more. I assume my anaemic symptoms have 'left the building' because I'm no longer deficient in folic acid. I've still got another 2 months worth of folic acid to take, and I'll continue to take them until they're all gone.

So what happens next? That's where the vitamin B supplements get involved. As well as the promised vitamins, they also contain folic acid. 200% recommend daily allowance (RDA) in fact, so this means I can now stop smoking asparagus and stop injecting grapefruit juice!!

So how does Gilenya fit in with all this? It doesn't. I've rummaged around the web and I didn't find any incidence where a link between a folic acid deficiency and Gilenya (or any another MS treatment) has been mentioned. We need to remember that not all of our health issues are because of this illness. I need to try and 'practice what I preach' because I blame everything wrong with me on MS. 

So how comes I became deficient in folic acid in the first place then? It's quite possibly diet related, but it's more than likely because I've got MS. Oh...?

Enjoy the natural vitamin D, all. 

Dan

Week 80

The folic acid tablets are going well. I did a 12 mile run the other day and I didn't fall over asleep once. 

Okay, some (all) of that isn't completely true, but my fatigue ain't too bad at present. That could be the drugs, it could be that the invisible monster is on the decline anyway, or it could be a combination of both? Does it really matter? Who cares? Not me. 

One thing that has improved over the last few weeks is my balance. I haven't had a single fall in that time because of lack of it - I won't be publishing this blog until tomorrow, let's hope I don't have to delete this paragraph between now and then. That surely is the increased levels of folic acid in my system preventing the dizziness, that caused the head spins and potential falls when I stood up, or even when I changed direction when walking. 

I have met a lot of people with MS over the years and I consider most of them as friends, so I do get to chat to MSers about this wonderful illness that we share. They're the best people to talk to about it; forget you're Consultants, your Doctors, even your MS nurses, your fellow MSers really do understand you. 

I was speaking to someone about it recently. I was moaning about my fatigue issues and she suggested I start taking 'B' vitamins. I had already tried taking vitamin B12 in tablet form, all to no avail, so I stated my reluctance to try them as if you start going down the supplement trail, when do you stop? You'll rattle every time you move and it'll cost a fortune. However, they contain so much potential benefits, I've decided to give them a bash. I mean, what harm can keeping your B1,2,3,6 and 12 levels topped up do? They're not expensive either. It's just two more pills added to the ever increasing list of tablets I take each day. If you're interested in trying them, here's a link to the ones I've just ordered. Cheap as chips:

http://m.hollandandbarrett.com/pages/product_detail.asp?pid=60&prodid=607&cid=67

Once again, I have managed to get through a Gilenya diary entry without actually mentioning the drug. Why do you read this drivel?

Happy Friday, folks. 

Dan

Week 79

As expected, I got a phone call from my Doctor's surgery last week, telling me that my vitamin B12 levels are normal, but - wait for the but - but, they told me my folic acid levels were low. So low, in fact, my GP had written me out a 3 month prescription for folic acid supplements. I asked the receptionist what the symptoms of a folic acid deficiency were, and she informed me that common symptoms are tiredness, having little energy (lethargy), feeling faint, or dizzy and becoming easily breathless. Well that explains a lot!

A bit of research with my mate Google, and I also discovered that not so common symptoms include headaches, heartbeats suddenly becoming noticeable (palpitations), altered taste and ringing in the ears (tinnitus). You may look pale.

Other symptoms may include numbness is your hands and feet. Some people may also have depression. Numbness in hands and feet, you say? Ha! I'm not a Doctor, but I can tell you that my numb hands and feet are nothing to do with me not eating enough broccoli, brussels, or any other vegetables high in folic acid!

Does this mean I'm anaemic then? The Pharmacist told me not necessarily, but I could've ended up that way had my blood not been checked. Yay. Go me! Going to see my Doctor wasn't 'an exercise in futility' (Pulp Fiction) after all. 

I've been taking 5mg of folic acid daily since Monday and so far there hasn't been any noticeable changes, but it's probably too early. As well as the fatigue, I'm hoping my dizziness will subside too. I've had a few falls this week. Three already in March to be precise, and a fair few of my recent 'carpet dives'of late have been due to a loss of balance, rather than a slump to the ground because of a weakness in the legs. 

Here's hoping the 'proper' falls start to stop (???) soon. 

Happy Friday ,

Dan

Week 78

Did you have any pancakes on Tuesday? I did. I had five. Lemon and sugar. No messing around. I love Pancake(s) Day!

In other news, I FINALLY got to see my Doctor this week and I was told that I need to have a blood test to see if I am deficient in vitamin B12. I already knew that. It feels like the whole world has told me that recently. All seven billion of you!

I had my blood test today and expect to hear the results confirming my B12 levels are completely normal in a week or so. 

Where does that leave me? Well, to be honest with you, I probably won't approach my Consultant and ask for more drugs. My fatigue definitely feels like it is on the wane. I said a little while ago that it's either improved, or I've just got used to it? Can you get used to living with fatigue? Probably not. So assuming my B12 levels are normal, I'm not going to ask for medication either. So it's all been a waste of everyone's time? Well, yeah, but, no, but...

Whilst I was there, I asked to swop the  Anticholinergic

medication I was taking (Oxybutynin) for one of the newer ones that don't have an impact on the cognitive issues that are associated with the older ones as suggested by my Consultant. 

Anticholinergic medication is used to  stop the spasms and calm down the muscles in an over active bladder. In other words, you don't have that massive urgent urge to run (ha!!) to the toilet every 20 minutes. You can take my word as an expert on this subject, when I say bladder incontinence most certainly is NOT an invisible symptom!!

Doctor 'Doolittle' (No he doesn't talk to animals, he doesn't do much for his patients) told me that he hasn't ever heard of what I told him and that oxybutynin is his antichloergenic of choice. I repeated my neuro's advice - a Professor of Neurology, no less - and he reaffirmed his view and said that if I could get my Neurologist to put this in a letter, he would then (reluctantly) swop my oxybutynin for a newer antichloergenic. 

He did, however, write me out a prescription for a drug called Loperamide. This is just like Imodium. It hardens the stools, so it gives more feeling when your bowels need emptying. With that you would expect more warning too. Let's hope so, eh? So my visit to my GP wasn't a waste of time then. 

Do something frivolous this weekend. That's an order. 

Dan

Week 77

I haven't updated this blog for a few weeks now   So what has been going on in 'Dan's world' in those last 14 days, you're probably not thinking. 

I have been talking about the fatigue issues I was  having. 'Was!' he spoke of it in the past tense. Hurrah! At this point, I feel that I should apologise for my bad grammar, because 'was' should've said 'am'. Why did i just write all that nonsense? I genuinely have no idea. So why haven't I done anything about it? Well, I have. When I spoke to my MS Specialist nurse recently, she told me that she couldn't request my Doctor prescribe me vitamin B12 injections unless I was actually deficient in iB12.  She also said I would need to come in and see them if I was after medication for fatigue. My endeavours had basically drew a blank then. 

More drugs are a last resort for me, so I booked an appointment to see my GP last week. The earliest I can get in as a 'non emergency' appointment is in TWO weeks time (it's in five days if you're reading this on Friday). I'll be attending with  all of my extremities crossed as an aid to the hope that I am lacking in vitamin B12. 

By the time I write next week, I should have some answers for

you which (unlike this blog) means I should actually have something worth talking about to say. 

I have had some toilet issues recently. On two occasions this year, I have been in a situation where I didn't have the necessary control of my bowels. In layman's terms - I shit myself! What a horrendous experience that was. The first time, I was at home, but the last one was in public. Fortunately, I was in an MS therapy centre where I attend on a Friday. So although I was 'out', it wasn't 'out-out', if you know what I mean. 

If it happens once, you can put it down to food poisoning, or a virus, or that dodgy kebab you had at the end of a drunken night out. But twice? The alarm bells are ringing here and I know I have to do something about it. I could change my diet. It contains a lot of fruit and a lot of dairy products, neither of which I really want to cut down on, let alone stop. More drugs then?

Diarrhoea (thank you, autocorrect) is a side effect people can get from taking Gilenya. There is no way I am thinking along these lines though, because I've been taking the drug for nearly 18 months now, so it would've reared its ugly head a long time ago if that were the case. I'm going to ask my Doctor for some Loperamide. It hardens stools and I know a couple of MSers with bowel problems that take it and highly recommend it. 

I've got a list of requests as long as your arm for the Doctor when I finally get to see them. 

Have fun this weekend. 

Dan