My wife, Sarah was diagnosed five years ago when she was 33 years old. It first started with pins and needles in her fingers. We went to the GP and the hospital, where she had scans and a lumbar puncture, and the doctors kept saying you have to have a relapse before you can be diagnosed with MS.
Well it turned out she had two relapses in the space of a year and so then the neurologist diagnosed her with relapsing remitting MS. She was suffering with it for a year before the diagnosis was made, but things were quite quick after that.
Before Sarah’s diagnosis we didn’t know anything about MS and the medication – we thought MS would be ‘it’. The people with MS I knew about were more serious, so the diagnosis was quite a shock to start with.
When Sarah got her diagnosis they gave us all the information about MS, the voluntary services, the MS nurse and so on. And she’s always got somebody professional to talk to about it if she needs to.
Sarah also has epilepsy. The specialist tells us it’s not connected but it felt strange that it wasn’t linked to the MS.
She started on Copaxone until an MRI showed increased lesions which lead to a change in medication. She has been on Tysabri for just over two years now and hasn’t had a relapse once. The pain is still there but things haven’t escalated. They did tell us about the possible side effects of Tysabri but at the moment she seems to be coping quite well with it.
Life on Tysabri is still the same, Sarah just doesn’t relapse now. But she is in a lot of pain. She was working before, but she couldn’t do it because the lesions she has give her pain in her arms and back, and her legs too.
She is unable to walk very far without pain and she can no longer do things such as wash her hair, which I do for her now. It upsets her a little bit that she can’t come to the park with us – she couldn’t push the kids on the swings, little things like that. We used to go out before the diagnosis but we can’t now, it’s too much for her. We go out sometimes, but it’s just local. I think it gets her down a lot; she has her good days and her bad days.
Financially it’s more or less ruined us. I’ve had to give up full-time work, that’s the major downside, to go part time to basically look after her and the kids, even to pick up the kids from school which is something she used to do. I daren’t even let her go near the oven, she could put her hand on the hob for 10 seconds before she felt it burning, so I will not allow it – I do the cooking these days.
It’s a massive strain on me, especially when I had a mini-stroke a while ago, but I deal with it, it’s what I’m there for. I’d not even thought about finding out or asking what help there is for me, I didn’t know there was anyone to speak to about it.
The only equipment Sarah has is a walking stick and a wheelchair – and a mobility car too – that’s all she really needs to be honest. I help her up and down the stairs. I’m looking at a bath aid for the future. I’ll speak to the MS nurses about that, they organised the wheelchair for us previously.
If Sarah is having a problem there are quite a few professionals she can speak to at a drop of the hat. There’s always somebody on the end of the phone at the Royal Hallamshire, but she would normally phone the MS nurse who will book her in with the neurologist if needs be. The waiting time can be a couple of weeks but they do always see her, so I’m quite happy with it.
Sarah can also speak to her GP about symptoms. She always sees a particular GP because he always knows what’s happening and we feel he has got to know more about MS. I am really confident with him. He will deal with the pain side and anything like that, but if he doesn’t know he will refer us to the neurologist.
Speaking from my point of view the staff in Sheffield are fantastic – they couldn’t do any more. They’re always on hand – Sarah can speak to her MS nurses easily, and if they can’t pick up the phone they always ring back that day. So basically thank you to them for doing what they do and being dedicated and having the knowledge. The knowledge, that’s really the most important thing.
Posted in: Patient's experience