Week 42

Before I start, I feel like the need to apologise about last week's blog. Lets be honest, it was pretty crap - more so than usual, even. I was on holiday (kind of), it was pretty much chucked together at the last minute and I even forgot to talk about what had been in the news concerning MS that week. Not my fault, it's the MS, blah blah blah. 

Had I made more of an effort, I would've mentioned the exciting news to come from the  Northwestern University Feinberg School of Medicine, in Chicago where they have been working on a new treatment that targets only the proteins that come under attack when the immune system fails to recognize them as a normal part of the body. Researchers hope they will be able to cure the disease but leave the rest of the body's defences on guard.

Good old copy and paste, eh?

What they are basically saying is that current medications are immunosuppressive - they stop the entire immune system from working, whereas this new medication only targets the parts that come under attack, leaving the rest of the immune system to do its job and fight off infections and other foreign bodies. 

These results are taken from a small stage 1 trial, so it is still a long way off from being administered to the masses, but it is another step in the right direction, and Dan likes this*.

Obviously this news is over 2 weeks old, so it's 'old hat' now, and you're probably telling yourself that you've read about it via a million links that have already appeared on your Twitter timeline. Well, what can I say? I am a bit slow on the uptake, but that's not my fault, is it?

Before I go I want to tell you that I have restarted my exercises and I have got a bit of much needed strength back in my legs. I've lost count how many times I've fallen over in the last month, or so. The humid weather saps my energy, so much so, the mild exercising regime that I have got actually makes me worse. Anyway, the milder weather this week has got me back on track and I haven't falling over for over a week. 

*I am aware that referring to yourself as the third person is a sign of madness, but I firmly believe that a little bit of insanity gives you great armour in this battle with MS and your homework this weekend is to do something frivolous. 

Stay crazy, people. 

Dan

Week 41

I've spent the last week at my Dad's in Norfolk. It's been nice to run away from Essex and all the stresses that come with it. I don't know who bloody invited MS though, but it came with me *colon/hyphen/close bracket* At least I tried!! Wouldn't it be great if we could have a holiday from illnesses? I'm not greedy. The last week in July, and the first week in August please? Oh, and a couple of days over Christmas too, if possible. 

One of the listed side effects with Gilenya is diarrhoea ( thank you for that, auto spell). Despite all the spicy food I eat, I never get this bowel problem - yep, tempting fate again. It's true though. My bowels were regular before I got ill. Every day without fail, I'd empty them. MS though, has made them go from one extreme to another. I could go 7 to 10 days even, without going, and when they Finally did go, boy do they go! Enough of that. 

This has got me wondering: since I stated taking Gilenya, I now go regularly. I believe that what some people would say is a negative side effect affects me in a positive way possibly?

My fatigue has been rubbish  since I last wrote. Even in the country, the humidity has been quite intense and in turn , my legs are crap and my hands are so numb its like wearing boxing gloves. It makes mealtimes a challenge, I can tell you. Roll on Autumn...

Dan

Week 40

I have been on Gilenya for the same amount of time as a gestation period of a human baby. Where does the time go?

I went to see my Neuro last week for the usual six monthly check up. I've been given an extended disability status scale (EDSS) of 6.5. I don't know how the point five has come about. I thought it was a straightforward one to ten, but there you go. 

We also spoke about the fact that I am entering the secondary progressive stage of the illness. I've spoken about this before, so I won't bore you twice on the same subject. That would be really boring! The bottom line is they will more than likely stop treating me with Gilenya in a year's time. At least I've been given a year's notice. The only concern I have with this is the theory that once you've stopped taking an immunosuppressive drug like Gilenya, your immune system kicks back in again, only it's more aggressive. Fingers crossed, I won't have slipped any further down the EDSS scale and they can see that my stability IS cost effective, and they keep me on it. It's all about the money at the end of the day. 

She also wrote me out a script for a drug called tinizidine (trade name Zanaflex). This is an anti spasticity drug, like Baclofen. My legs have stiffened up a fair bit of late, and as I've already said about my reluctance to increase the Baclofen, it was agreed I should take something else. That's where the tinizidine comes into play. It can either be taken alongside Baclofen, or it can replace it altogether. My plan is to do the latter. You can't go in at the desired dose, but you have to titrate the drug slowly. I am up to three 2mg tablets per day. I think you can go up to 16mg per day. I know I can go a lot higher than what I'm on at present. The plan is to hit 12mg, then cut down on the Baclofen and see how it goes. 

So what next on the SPMS and treatment front?  Keep my ear to the ground and try to get my backside on a drug trial for people that are SPMS. That something that they're finally looking into. Up until recently, if the word 'progressive' was included within your diagnosis, you were put in the corner of a room to waste away, because it was universally believed that there is nothing they can do for you. 

They are recruiting for people with SPMS to go on a Tysabri trial that I know of. They're also recruiting primary progressive MSers for a drug called Ocrelizumab, so we've all got some hope, regardless of where we're at with this illness, so I'm not prepared to give up yet, and neither should you be. 

Speak soon,

Dan

Week 39

Well, guess who's having a right crap time at the moment? Yeah, your's truly. It's the weather. It has made a mess of of my legs and my hands are so numb, I can barely hold a knife and fork. My legs are rigid most of the day. I can only bend them at the knee using my arms. 

I tried to combat this by increasing   my anti spasticity drug Baclofen from 40 mg a day to 60. This has made no difference whatsoever. I'm reluctant to go any higher as the drug does have a bad press. You see, Baclofen relaxes ALL of the muscles in your body. It doesn't just target the area's that need it. Prolonged use can make your muscles weak, eventually causing muscle wastage. I want to hang on to what I've got for as long as possible. I even know of some people's claims that Baclofen has put them in a wheelchair! I don't know about that, but it is considered a very controversial drug to take in some circles. You're damned if you do, and you're damned if you don't. Anyway, I've gone back to my original dose of 40 mg of the Baclofen. There's no point taking the extra if it isn't helping me. 

So why the change? It happens every year. It's the weather. Although I am worse this year. It's not even particularly hot. It's just hitting 20 degrees, but it has literally changed overnight. We had snow at Easter on the Costa-del-Southend, and in some parts of the UK they had snow in May! It's the sudden change in the weather that's done me. That's my opinion anyway. 

Fortunately the Gilenya is still doing its bit. I had wondered if my body was starting to build up antibodies against it. Fatigue has made sporadic appearances, but it's still only minimal and I am keeping my eye on it. However, I am expecting to see more of it as the temperature rises. I haven't had to go to bed at any stage since I've been popping this daily pill, so when it does crop up, it is manageable. 

It's just a shame that this treatment never made an impact on my ability to walk, or even the spasticity. That's one symptom I could really do a bit of relief from at the moment. 

Dan

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 

Southend-on-Sea. 

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. 

Dan 

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,

Dan 

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. 

Dan

http://multiple-sclerosis-research.blogspot.co.uk/2013/05/oxybutynin-worsens-cognitive-impairment.html?m=1