Thursday, 27 June 2013

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. 


Friday, 21 June 2013

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...


Friday, 14 June 2013

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,


Friday, 7 June 2013

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.