Relapse Schmelapse.

My lack of updating in this blog just goes to demonstrate just how skewed a picture of a treatment can be when taking user reported experience - with people much more likely to be vocal on a subject when it is not working. I get surprised when the MS nurse says to me that they would not expect me to have relapses on tysabri, because after all, it is not a cure. However she did say that of the 30 people currently on the treatment at Addenbrookes hospital, none have ever had a relapse on the treatment - until this year when two people did who had been on it since it came out. This is a very different picture of the drug than the one that you build from googling and reading diaries and trawling forums, because if it is going well, who wants to keep going back to say 'it's going well still thanks'. Not many - most want to forget about MS and get on with their lives save for the four-weekly trip to be infused. 

That is not to say that this update is because tysabri is no longer working for me - it is. But I might have had a small relapse last month. I went to my last infusion (number 7, number 8 is tomorrow) and reported having experienced a re-occurrence of certain symptoms, namely those of bladder and bowel disturbance along with a new experience of blurred vision in my left eye. The MS nurse said she would hedge her bets it was a urine infection, but that if I tested negative for that it could well be a small amount of new MS activity. It was an odd feeling to be sitting in a room with other people on drips and have a nurse report that 'everything was okay with the sample' with a distinct tone of disappointment and sympathy, instead of the usual cheery tone that would accompany the delivery of such news. I didn't see the MS nurse again after the negative urine sample but she said she would 'note it in my notes' and I guess that is all there is to it really. It isn't bad enough to want or need steroids, and I definitely don't want them to take me off tysabri, so when new symptoms appeared this month I thought it best to keep quiet about it. After all, if this is a relapse, it is much milder than any pre tysabri relapses, but I don't know if the NHS are willing to keep someone on a drug that costs them 30k a year if it isn't 100%  doing 'what it says on the tin'. Nothing anyone has said has given me that impression, at least not in relation to MS and tysabri, it's just my own personal concern based on other decisions NICE and the NHS and PCTs take when it comes to things being 'financially viable'. 

So do I report to the MS nurse tomorrow about the numb tongue I had for half of this month? Or the three numb toes on each foot (although to be fair to MS I think that was from my stupidly brazen attempt at wearing heels for a night out.)

I still like tysabri even if this is a relapse, I don't really care in regards to the tysabri. It makes me hate MS all the more for not ever thoroughly pissing off, but that I knew that anyway.

UTI's DLA and other Acronyms.

Continuing the theme of it being a pretty shitty four weeks, the day I finished the anti biotics for the infection I had after getting bitten by a bug, I got a nasty UTI, cystitis to be specific. And it was well beyond the cranberry juice stage.
I was bumbling to and from the toilet with no problems beyond the burning dribble of pee every couple of minutes. Like my experience with heat, I had read about infections making MS worse. It didn't appear to be happening, and I even started doubting I had MS at all. After about an hour or so, as if to prove a point, my leg just suddenly went.
I spoke to the local practise nurse at the GPs surgery, and she said that because I had back pain I had to have more anti biotics, luckily just a three day course.
So it was a pretty sedate weekend, mostly spent sleeping, peeing, drinking gallons of water, and generally feeling sorry for myself.

To top that off, I got my DLA renewal pack in the post today, obviously totally expected, as I knew it was coming up to that time. When I first claimed it, a charity (I think they are a charity anyway, maybe an organisation, I don't know to be honest) called Disability Cambridge helped me fill in the forms. The guy said to just ring him when it came up to renewal and he'd help me again. So I rang them as soon as I got the dreaded forms in the post, only to discover their funding has been cut, and they are no longer taking new cases. However when I gave him my address, he did say the guy I saw last time was still trying to help people in the City if he could, but it was up to him so I have to wait to hear.
It just makes me so fucking angry, another Tory thrust knife in the back of the disabled. I am sure this service in itself can not cost much at all. However by cutting services like this, there will be more people that will now not be able to claim for things to which they are entitled because there is no one there to advocate for them, tell them what help they can get, and generally help navigate some of the many minefields that having a disability can bring. And I am sure that is exactly what The Big C's want. Take away much needed help, so that the disabled have less of a voice and are pushed back underground.
So much for the big society. You can be a part of it, just so long as you can do everything for yourself.

**and breathe**

Back to the main reason for this post, which was that after the infections I spoke briefly to the MS nurse, who said that it will still be fine to have the tysabri infusion next week and that they only tend to delay the infusion if someone is showing signs of the beginnings of an infection, so getting over one is absolutely fine.