what should I expect?

Everyday living
1

I was told years back that I have benign MS, and so far, relapses have seen be go back to where I was before they happened - I was diagnosed 21 years ago. It’s been a difficult year, though, and since xmas partiularly. At present, I have restricted movement and sensation in my left leg (started with left arm, which is 90 per cent back now. I’ve had two courses of steroids since Sept, and last week found out I have a bladder infection which could be a factor in this last relapse - taking antibiotics this week for that.

My question is what support to expect? I rang the MS nurse last week, and spoke to the assistant - not much forthcoming from there, though I have seen a physio who gave me some exercises to do.Nothing else though - and I guess they’re really busy, but am I wrong to feel that I’m here (west Cornwall) on my own?

Last time I saw the MS nurse, she had talked about stepping me up from Avonex to Tysabri - left open, as I didn’t want to rush into anything. I should have seen her yesterday for follow up, but as I can’t drive, that wasn’t possible.

Any advice? and thanks! Amanda

2

I would ring your ms nurse again. Tell the assistant you really need to speak to the nurse. Be persistant. My ms nurse is great and always gets back to me.

Have you got a friend/relative that could take you to see her/him? If not then sometimes the nurses will do a home visit if you explain your circumstances.

You may need an appointment with a neuro to discuss your options about medication though.

Do you want to change to Tysabri? Are you unsure? Do you want them to talk you through your options?

It sounds like they are waiting for you to decide about the tysabri and let them know as you didn’t want to rush into anything.

If you can’t get any help via the nurse/assistant then perhaps your gp can help you.

Teresa.x