Friday, 31 January 2014

A New Year..and some big issues.

After nearly 13 years, I thought I'd finally gotten to grips with this whole MS lark, but no. It decides to throw sme a curve ball.

Bear with me...my mind is pretty frazzled. And the problem with not writing for a while is that I feel like there's loads I need to off-load...but I'm going to try to keep this to the point. I apologise if I start waffling though...and if my spelling or grammar is shocking!

I have suffered from 12 major relapses that required steroid treatment over the last 13 years. And the first 11 of those relapses followed the same 'pattern' in that it affected my legs and movement. However, this time...it's been different. I've been struggling so much over the last 4 - 6 weeks, having more bad days than good and I assumed it was all down to the house selling/buying and generally being run down or whatever. Which it could of been, sure. However, I think looking back I've actually been relapsing over that time and I haven't realised. Which sounds stupid, I mean, how can I not notice?! But normally when I relapse, it happens very quickly like someone has literally knocked the feet out from under me. This time, it definitely built up slowly. I found I was forgetting things..a lot. To the point where at one point I was holding my close friend's baby and panicking, thinking to myself  'oh my god...I don't know your name'. I was doing things, like taking my medication, and forgetting 5 minutes later that I had done it (thank goodness for my daily dose organiser). Having to take pauses when I was talking to someone to try and get back on track. Picking up the remote control and forgetting how to do something. Not being able to spell things properly. Driving and not being able to remember where I was heading. Bumping into things..a lot. It was snowballing. 

Then last Saturday, I noticed I had started talking with a lisp. And my teeth felt kind of numb, like I'd had an injection from the dentist. This got steadily worse, and before I knew it, I was finding swallowing difficult. 

Of course I went to the doctor, then my consultant, to be told it was a relapse. But it threw me. I was having a relapse but I could still walk. I felt...relieved. Even though I was still obviously very ill. Just not having that feeling of frustration because I couldn't get around, made things easier. I was due to be put on steroids without hitting absolute rock bottom..and it felt..kind of good. Like I was taking control of the situation. I have this fear when I go to the consultant or doctor, that they are going to say I'm exaggerating, or not believe me or something. I was trying to think of where this came from, and then I remembered one Registrar doctor who, when I walked in with my stick (because I was feeling a bit wobbly and it made me feel more secure) said 'why are you using your stick?'. Now, I'm sure he meant that in a purely 'tell me what's going on' thing, but the way it came out made me feel instantly on edge, and obviously feeling tired and over-emotional, made me feel like he was accusing me of something. Stupid I know...but understandable. 

So this time, despite not having my 'usual' symptoms, and me convincing myself that I wasn't having a relapse because I could walk, my consultant could tell something wasn't right. And that's the thing with MS. I knew it varied so much between sufferers, but I didn't think it would vary with me after all this time. It made me realise that I've lived with something for nearly 13 years, and I still don't know it, and probably never will. Do these new symptoms, mean there's new damage elsewhere in the brain? 

It has certainly made me reassess things again. I haven't been on any medication for 3 and a half years now, after my consultant admitted that the interferons didn't seem to be having any effect. Fine by me, because I hated HATED injecting. But now, there is a new oral medication http://www.mssociety.org.uk/ms-news/2013/12/nice-confirms-new-oral-treatment-ms-nhs that has just been approved. It is meant to reduce relapses by 31%, and if taking the higher dose of 14mg, helps reduce the number of brain lesions by 80%*. 

Now you can see by my latest episode, why this particularly appeals. Yeah, there are side effects, but nothing worse that what I went through with the interferons. Plus, I'll start trying Amantadine as well, to try and combat some of the extreme fatigue I've been getting. It doesn't work for everyone, but it's worth a try. 

I still believe in the Swank diet, and will definitely stick with it (whether it stops the progression of disability or not, I know for certain that it makes my day to day symptoms better), but a new oral drug popping up just at this time (it literally got released 2 weeks ago) has got to be good news. After all, a combination of that and the Swank diet is covering more bases. I've been put on the waiting list, so fingers crossed it should be available to me within the next few months. The bad side to it, is that it not safe to attempt to get pregnant on Teriflunomide (Aubagio), and it stays in the system for 2 years (though they can do something to flush it out quicker). So it sort of makes up my mind about having another baby any time soon. Never say never, but at the moment, it would just be too much pressure on myself. 

It's time for me to concentrate on what's best for my health, try and get back on track with things, and be as fit and healthy as I can be for Libby, Si and everyone that I have already.

Anything to avoid a repeat of this for a good long while. 


steroids, drip, hospital, MS, relapse
Grim.