Friday, 31 May 2013

Week 38

I did something the other day that I haven't done for well over thirty years: I fell out of bed! Serious. It was time to get up anyway, so no big deal. I don't want to include it on my tally of falls in May, but I suppose hitting the deck is a fall, so I have to include it Hang on, no I don't. My blog, my rules (stop calling me a fascist!). I was asleep, it had nothing to do with MS and I didn't hurt myself. Therefore it's off the list! 

I did, however, manage to unintentionally go to ground on two occasions in May, neither of which were under the influence of alcohol, but that still ain't bad. They were at the beginning of the month too, so I'm doing okay despite this warm weather making my legs somehow manage to resemble jelly and lead at the same time. 

I am attempting to shit on fate once again because as I am writing this blog, it's still May. The date is  Tuesday 28th. It's half past three and I'm already drinking Vodka.

The Gilenya is a case of 'Same old, same old...' That's not a bad thing. It means I am stable(ish), and I'll take that for now. The 'ish' bit is included because my legs are rubbish at the moment and my extremities are numb. That is nothing to do with the meds, it is due to the glorious weather we're enjoying at the moment in the UK! Okay, we've had a couple of days in the late teens; I think the temperature even hit 20 degrees one day last weekend in sunny old 

I find myself getting more sensitive to the heat as each year passes which is a bummer.  I am presently house hunting in Finland. I wonder if the NHS deliver my tablets to Helsinki?

I could move to Scotland, it's always cold there. Well  if the weather forecast is anything to be believed. The only problem with Scotland is that they have the highest (or is it lowest?) ratio of people to MS in the world. It's about 1 case of MS per 400 people there, whereas on this side of Hadrian's wall, it's about 1 in 600 odd. That would be just my bloody luck to get it twice!

Guess who fell over yesterday (29th)? Yep me. 3 falls in May - provided I don't fall over tomorrow. 

Have a good weekend. 


Friday, 24 May 2013

Week 37

Last week I mentioned oxybutynin and its possible effects on cognition. My GP said the dose I take won't affect it, so I've asked my consultant, but they haven't got back to me, so I'm none the wiser and still on the older anticholinergic. I've got a clinic appointment in June, so I'll ask in person the if I haven't heard by then. 

I'm also going to ask about my MRI scan results, and if there are any visible signs of cerebral (brain) atrophy on them. Atrophy is when the brain shrinks, and I know what you're thinking - actually, you're probably thinking, why does he always tell me he knows what I'm thinking? Ha! And now I've forgotten what I was actually going to say. It'll come back to me in a minute and I'll add my point and then I shall delete this nonsense. 

Brain atrophy. Many neurological illnesses cause the brain to shrink and MS is one of them. I remember what I thought I knew what you were thinking. You were assuming my brain must've shrunk considerably. Worth the wait? I don't think so either. 

I am curious to know how my scans shape up compared to the general public. My MS has progressed quickly and I wonder if it has had an effect with tissue wastage. When that damage is done, it's done, irreversible. I reckon that's a sign you've crossed over the threshold from relapsing remitting MS into secondary progressive MS. For the record, I believe that diagnosis  is due any day now. I've been expecting to hear it for 2 or 3 years. I'm not bothered, it's just a word at the end of the day. We are taken out of one 'pigeon hole' and put in another, that's all. 

This is where I contradict myself over what I've just said because there is a concern that I have with the secondary progressive tag, and that is about my medication. Will they withdraw it if I am deemed progressive? I honestly don't know the answer to that. I mean it definitely is helping. Of that I have no doubt, but will the powers that be decide that it is no longer cost effective giving Gilenya to somebody secondary progressive? Am I clogging up the system? Is my being inside said system delaying another patient's inclusion? I will do my upmost to stay on an effective drug for as long as possible, or am I being selfish? 

Or what about the theory that when you stop taking an immunosuppressant (Tysabri, Gilenya, Novatrone,  etc), it kickstarts your immune system, thus making it more aggressive than it was before you started taking the treatment? The relapse rate of MSers coming off, say Tysabri to start a new disease modifying therapy is higher than average. That's exactly what happened to me.Bit of food for thought for you. 

Maybe I shouldn't instigate this issue when I see my neuro next month...

Happy Friday,


Friday, 17 May 2013

Week 36

Well guess who didn't make it to have some hyperbarick oxygen last Friday ? Yes, yours truly got a puncture less than a mile from home by the time I got the tyre fixed,  I didn't have time. It's not the end of the world though. I don't even know why I've wasted your time telling you. Sorry about that. 

Last time I wrote I was quite fatigued and I said I wouldn't fall asleep. Well I did! So what do I know about this illness. You're probably asking yourself why you read this fool's blog. If I wasn't me, I wouldn't read this inaccurate rubbish either. 

I don't know if I've mentioned it or not, but due to an overactive bladder, I self catheterise every time I wee. I use the Speedicath Compact male by a company called Coloplast. They're called 'compact' because they are just that. They come in a green plastic tube that is about 8 inches long. "You what? my urethra is longer than that!", is what any male catheter user would say right now if they were reading. The way it works is that as you pull it out of the case it extends to nearly double that length. A bit like an old  radio aerial. 

That's the advert over, so I'll get to the point I was going to make, and that is that to help with my excitable bladder, I take a drug called oxybutynin. Oxybutynin is an anticholinergic, which means it interferes with the path of the nerve impulses. As they calm down, the muscles around the bladder relax and the constant urgency subsides. 

I was reading a blog that my Neurologist writes and he's said that there is a link between older anticholinergics (such as oxybutynin) and cognitive impairment. I'll put a link to the blog at the bottom, if I remember. Newer anticholinergics don't cross into the brain like the older ones, and therefore don't contribute to the 'cog fog'. He then advises anybody taking a drug like oxybutynin to go and see your GP and ask for something different, something newer. 

So guess where I went yesterday? Yep, I went to see my GP about oxybutynin and he says that the dose I take is low (7,5 mg), so it won't affect my cognition. He also says it is by far the most effective eanticholinergic on the market. I'll have to speak to my consultant about the dosage and see what he says. 

For the record, I am not on Coloplast's payroll. The male compact Speedicath catheter really is that good. Try it. 

Happy Friday. 


Friday, 10 May 2013

Week 35

Well we've hit May and the weather has finally turned. I'm not great in the heat. Every year I hope it doesn't play havoc with my symptoms and every year it does. It's not the heat that does me, it's more the humidity. It affects my legs the worst. I've fallen over twice already in May. Once was self inflicted (hic) and the other was a balance issue. Both times I bashed my head and I did suffer a lot of pain. No permanent damage though. 

Speaking of falls, I got through the entire month of April with just one fall - and that was in the very last day in the month. I've said before that this is more than likely the exercises I do, rather than the Gilenya. 

That fall along with the two others I've had at the start of this month means I've had three in a week. That's a bit of a worry. Despite the leg strengthening and core stability exercises I do, I haven't been so stable on my feet. I don't know if it has anything to do with the change in the weather, or not, but I'll monitor it. Maybe I should cut down on the booze a bit too!

I've had a couple of occasions where I've had fatigue this week, but I can live with that. Compared to pretty much constant, it's a massive improvement, and one that is a most welcome relief.

As I write this (Thursday), I have fatigue. I felt fine this morning and I went to the pub for lunch with my uncle. I had burger, chips and a pint of Guinness. I got back about 4 o'clock and out of nowhere - guess what? Yep, the fog was there. That dark misty sensation that lets you know that every muscle in your body is exhausted and every movement, no matter how minor, will be extremely laboured. There's nothing you can do about it, so you just go with it. I'm just laying on the bed now and listening to music as I type this. It's the Yeah,Yeah,Yeahs new album - Mosquito. Nice chilled out music. 

I won't crash out. I did for about half an hour, or so when I first got back, but on these rare occasions that I get fatigued, I can honestly say that the fatigue isn't as deep. You know what I mean when I say 'deep'. I credit Gilenya with that. Long gone are the days where I would sleep for two or three hours after lunch every day. It's so nice to have finally found a drug that is beneficial for me. 

It may sound strange me saying that despite this black wall in front of me, but I expect to be fine in an hour or two. I might even do some leg strengthening exercises later. Then again, I might not. 

Hyperbarick oxygen tomorrow. 

Happy weekend, people. 


Friday, 3 May 2013

Week 34

I was supposed to get back to you all last week about my fatigue, but my MS made me forget; not my fault.Had I remembered to include my findings I would've told you that other than the two occasions mentioned where I had fatigue, there were no other times up until last Friday where I had any. Over the last seven days, I have experienced fatigue on just the one occasion - Wednesday afternoon. I can live with that!

I restarted my hyperbarick oxygen therapy (HBOT) last Friday afternoon. For those that don't know, HBOT is where you breath 100% oxygen at a depth of 33 feet below sea level.

It was nice getting back in the submarine again. Okay, it's not a submarine and it doesn't actually go under water. It feels like you're in a submarine though. You get locked in a large metal cylinder and they adjust the air pressure until it's the equivalent of being 33 feet below sea level. This takes approximately 15 minutes to. 'dive' to this depth and at this point, I need to point out that you can forget this treatment if you suffer with Claustrophobia as that door won't open until the air pressure is identical on both sides of the door. When you reach the desired depth, you put on a mask that has been connected to an oxygen tank, and, erm..., breathe. And that's it. The oxygen is pure oxygen.

When we inhale air, about 70% is Nitrogen. You've got some inert gases too, and the remaining 20% (ish) is Oxygen. Obviously the oxygen you're inhaling in the tank is 100%.

That's the Science lesson over, now back to why HBOT helps me. You're having the oxygen for an hour at a time. I don't notice any changes straight away, but that evening I feel more alert, my cognition is better. You know what 'cog fog' is like. I suppose it is all linked to fatigue which is better. Also my bladder is much better. I can control it more. It's a bloody nightmare when your bladder is in control of you!!

I should point out that trials were done on this therapy for people with MS, but the results came back inconclusive, so the National Institute of Clinical Health and Excellence (NICE) (why isn't it called NICHE?)chose not adopt it as a therapy for MS. Basically it helps some and makes no difference to others.

My fatigue and my bladder are two things that have improved since I started taking Gilenya. I know it's the drug that had caused these improvements because I stopped the oxygen when I started the medication. If I had continued my oxygen, I wouldn't know if the Gilenya was working.

The effects I get from the oxygen don't last forever. I go in the tank on a Friday and I'm good for the weekend. I would go twice a week, but unfortunately they're not open every day.

I would definitely advise you to look into it and see if you have a hyperbarick oxygen chamber near you. I'm lucky, the one I go to isn't even 20 miles away. What harm can it do? There are no adverse effects to breathing in oxygen. Nothing can go wrong. Go on, try it.

Enjoy your weekend,