Monday, 6 February 2012

Hello Everyone.................I'm Back!!

Oh my goodness, I can't believe just how long it's been since I wrote my last post. I feel really sad as this was something that I wanted to do regularly. As well as helping others it has always helped me to write down what has been going on and I have really missed not writing on here.

It's a new year and a new start!

So what has been happening?
I have had quite a rough time, I guess that's why I haven't been on here.
I saw my consultant a few months ago.
I love my consultant, he is so easy to talk to, to be honest with and you know you are going to have a proper conversation with him. Very often it's easy to feel talked down to by the Doctors. I have always felt that they know what they are doing and you have to listen to what they say and do as you're told. But with my consultant I really do feel that I can talk to him properly. Yes, he's the one who knows what he's talking about but when you have a condition like MS, the patient is an expert too.
We discussed my pain and fatigue.
He told me that there are medications that can help fatigue. They don't work for everyone, but he was happy to do a prescription for me to try and see whether it helped.
The script he gave me was for Modafinil (Provigil) 50mgs up to twice a day. But the second tablet not to be taken after about 3pm as it could affect your sleep then.
I got the tablets and started taking them. I have found them to be really helpful. I tend to just take one a day, unless I know I have something in the evening that I want to be awake for. I certainly don't take it after 2pm otherwise I really struggle with sleep.
It has helped me to not feel quite so sluggish and before I was taking these I consistently needed a sleep in the afternoon. But I am not needing that quite so often.
I'm delighted because we are going on a big holiday in May and I want to be able to enjoy it. Now that I've found a medication that can help, I feel that I am going to be more in control of my fatigue.
Don't get me wrong, it's not a miracle cure and I still have bad days. I still need afternoon rests, but it has definitely helped and will be a benefit on holiday!

Another thing we discussed was the Tysabri infusions that I am on.
I have been on them for over two & a half years now. I'm not convinced as to whether it has been doing much for me. I have had a few what I would call relapses, but according to my consultant they haven't been.
I get so wound up about the whole relapse thing. I have symptoms constantly. I've not had a symptom free day since my MS started in 2002. And I have periods where they are worse or where new symptoms come along etc, but generally I am always told that it's not a relapse.
My psychologist, when I was querying this once, said does it really matter what label it has, if it's affecting you then it's affecting you and that's all that matters. He has a point!
My consultant organised for me to have an MRI scan. This showed that nothing really had changed.
He also organised for me to have a blood test for the JC virus. This is a test that if you are positive for the JC virus indicates that you are more at risk for developing PML, the brain infection associated with Tysabri.
I had the test and I am negative for the JC virus. My consultant has encouraged me to continue on with Tysabri as it is the best thing available at the moment. So I am continuing on with the infusions. I don't actually feel any difference when I have the infusions. Some people know when their next infusion is due, they know that it has an impact on them. I don't feel that at all. Of course that doesn't mean it isn't helping though!
I will point out that I know of several people who have tested positive for the JC virus but they are continuing on with the Tysabri infusions. We have had discussions about this and we have all said that actually it doesn't really make any difference if you test positive as to continuing with the infusions. When we all started this we had no idea about the test and we all took the decision that it was worth the risk. We are all monitored very well and knowing that you test positive just means that you will be monitored even more closely.
I'm not saying that it's not important to know whether you are positive or not. It is really important because it points out who needs to be watched more closely.
Even though I have tested negative I am to be tested every year to make sure nothing changes.

The other main problem I have been having is with my pain.
It is a symptom that I have had from the start and is one of my biggest symptoms.....................and one of my biggest problems!
I saw my pain consultant in December and we have set off a chain of events that will take me a while to write about, so I will write a separate post about that in the next day or so!

I hope everyone had a wonderful Christmas and New Year. I hope that you are all keeping well and that as the cold weather is taking hold, you are all keeping snug and warm! :-)

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