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what should I expect?

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

Hi Amanda,

I’m afraid I can’t really advice you on this except to say, ask your ms nurse if she can come to you as you cannot get to her. Give yourself some time and think about changing or not changing your drugs. Hope you feel better soon.

Janet

x

I was diagnosed14 years ago and, like so many others, have been in total denial. Nobody at work knows as I don’t want them to treat/judge me differently Recently I have had a bad relapse and I am really scared as it doesn’t seem to be going away. The doc gave me steroids and for 5 days I felt fantastic but as soon as I stopped them I felt rotten again. I don’t take any drugs and I don’t have a MS nurse but I think I might be needing some help. I am really depressed and my husband is worried sick.

Hi all Find your nearest social services office and ask for adult care. I did, months ago, after advice from a friend. I made a self referral and have since had an OT and physio come out to the house, make recommendations for adaptations which they have now done, my OT referred me to a community MS nurse, continence nurse and speech therapist for swallowing. All came out to me, all free of charge and all invaluable. Xx