Sunday 9 December 2012

Week 13. 10.12.12


I declared my last blog as the three month mark, but officially 12 weeks isn't 3 months. (4.3 weeks in a month and all that) So NOW is three months on Gilenya.

When I last wrote, I left with lots of questions. I am not putting my recent problems down to a relapse. You KNOW when you are having a relapse. I have gone downhill of late, but I have had a difficult time. I was recently involved in an accident where my car was written off and that could be why I considered that I could be heading towards a relapse. I've rested a lot this week and I do feel better for it, so lets keep the thoughts of a relapse at bay. In fact, lets use a bit of positive thinking and forget all about it.

My fatigue is definitely a lot better. I finished off my bottle of vitamin B12 tablets over a week ago and I haven't bothered to replace them. I really do feel more alert, more awake.

I had an appointment to see my Consultant the other day. . It was my 3 monthly Gilenya review at the Royal London Hospital, which is a bit of a pain, as it is a 100 mile round trip from (the Costa Del) Southend. I've always considered it to be a worthwhile journey though, as you're in good hands with the Barts lot.

I saw a different consultant, and it turns out she is based in Southend. She is the new consultant there. Small world, eh? This is because Barts and Southend hospital are working closely together at the moment and there is now a Tysabri clinic set up there and they've even just started a few people on Gilenya. This means I can now have my clinic appointments locally whilst remaining under Barts and the London Trust, so all good news there

Dan

5 comments:

  1. Really pleased you are feeling better and that the pills are working for you! I cannot fault the Royal London (where I am an outpatient on Ty) or my Neurologist there. Keep positive! Xx

    ReplyDelete
    Replies
    1. They're all fantastic at the RLH. Freya is my MS nurse and I love her to bits. Xia is great too.

      I see professor G and Dr Marta. All lovely people.

      Even though, I've swapped Tysabri for Gilenya, it's nice to know that I'm still under that team.

      Delete
  2. Hey Dan, I found your blog via a RT from MS society on twitter.

    Sorry to hear about the car accident but, on the flip side, I'm happy to hear your fatigue is better.

    I'm not treated here in the UK, I have been refused by the crappy trusts here. I have to travel to Italy every 5 weeks for my tysabri treatment, I do a day trip as I work also (and pay taxes).

    I'm not sure if I want to transfer to the pill, I was given the option earlier in the year and it just didn't feel right as, I really feel good with Tysabri and I don't have JC so, I'm long term safe on it.

    I can't really afford to keep the traveling up much longer, I get no help with costs of travel etc. I'll just try cold turkey and see what happens.

    Anyway, I just wanted to say hi, I really enjoy reading my MS family (it's how I see the MS thing, there is little more than 2million of us around the world) blogs.

    Drive safe

    M

    ReplyDelete
    Replies
    1. I'm sorry to hear about your trouble involving your Tysabri. You pay national insurance, why won't the NHS treat you? If I were you, I'd contact the MS Society or my local MP. I think you may have a case.

      As for going 'cold turkey', I don't recommend that. Both times I tried it, I had a relapse. Fight to get Tysabri over here. If you're unsuccessful, you could always ask the Italian health authority if they would post Gilenya to you over here.

      Good luck.

      Delete
    2. Hi Dan,

      thanks for shout back, I did contact the MS Society, many times over the last two years but, they are useless and have been ZERO help.

      My MP also has been contacted, he is a waste of my tax paying money, not fit for office, not even close.

      It's a bit more complicated than just getting Tysabri here, I would like to have shared care and go back to Italy every 10-12 weeks as opposed to every 5 weeks. It would half my financial burden and I can live with that.

      The reason I want shared care is how I was diagnosed, I spent so many months seeing doctors here in the UK and they told me I had a bad back, I begged for an MRI and they said I needed physio on my back...

      I don't trust the doctors here, I really begged for an MRI.

      This is the reason they will not treat me, I was not diagnosed here, all my charts are in Italian, done by Italian doctors.

      They told me that if I transferred here, exclusively, we could talk about treatment (Its about money and cost, if I just get the drug here, the fake doctor in his dirty white coat with his un-brushed teeth will only get paid if he sees me and controls my drugs). As I just cannot do that, I can't really tell you how much I have been through to get where I am, it's been a pride swallowing siege and I have done it alone.

      The people I thank are my Italian doctors, I could not walk so well when I saw first saw them, my eyes were going nuts, my left leg was shot, incontinence and the rest of the usual suspects with MS.

      They saved me, gave me their home numbers, email, home visits and went beyond duty to help me understand MS, talking me through it in a mix of italian and limited english. I cannot leave them, what they did for me, no Dr here in the UK would have done.

      3 monthly consultant (fake dr) visits like here in UK are just not the way it's done over there. I see my doctors every 5 weeks before infusion for a check up of neurological motor movement and some jokes etc.

      My family god bless them, just had other things to do at the time, maybe it was for the best, it made me harder to MS.

      If I went cold turkey, it would be to prove a point, nothing more. However, you are right, relapse is horrible,the last one really messed with my eyes and coordination.

      It's a long long story Dan, I'm just happy to read other stories that are the flip side of mine. They inspire me and take some cynicism away from my views of life with MS and well paid doctors/politicians taking my money and giving nothing back.

      Drive safe and merry Christmas

      M

      Delete