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Newly diagnosed Help

Hello, My sister has recently been diagnosed with MS. She had this confirmed in May by a consultant. She has since seen the MS nurse to start her medication. We are so concerned about her, her symptoms seem to be getting worse. She fell down yesterday and couldn’t get back up, she’s blind in one eye, has numbing to her face, the list goes on. She’s been told by the nurse that they want to see her in 3 months time. Inbetween this, what should ahe be doing with each new symptom just accept it or contact 111/drs. We don’t know enough.

I suggest you / she contacts the MS nurse and says she needs urgent reassessment and assistance. It seems that her MS is more active than the average. And that might need a more aggressive approach than just, ‘come back in 3 months!’

I hope she gets some help, maybe some IV steroids, maybe a more suitable disease modifying drug, maybe jut some more guidance as to what she’s supposed to do with such severe symptoms.

Best of luck.

Sue

Thank you. We feel at little lost with it all, so god knows how she must be feeling.

if she has begun a course of DMDs the nurse should be monitoring how effective they are.

phone and/or write to the consultant’s secretary and the ms nurse.

it is fairly normal for things to get worse before they get better.

meanwhile keep you sister calm, avoiding stress.

make happy plans of places you will take her when she begins to feel better.

feeling safe, calm and supported is what she needs right now.

My wife has was diagnosed in march but we have been aware she probably had Ms for a year before that. We don’t like it but i think are both getting more used to it and now have accepted it for what it is.

I can cope with her being disabled and very happy to give her more help than she is willing to accept(even though she needs!) but this whole falling over thing does worry me.I am pretty sure its happened more than she admits.I am out at work a lot of the time but i have seen it happen numerous times and its fairly unpredictable,sometimes the legs go like jelly and she can grab something and drop gently and under some control and other times she is just upright and then laying face down or sitting on floor in the blink of an eye,as far as i can tell its just luck that she hasn’t hit her face on anything yet! One predicable part is following a shower,she has stopped washing body and hair at once as this ends in a fall shortly afterwards every time. Although last time she just washed hair and her disabled daughter had to call her brother down who picked her up.She doesn’t attempt shower or hair washing if alone at home.

This week she is having a care alarm thing fitted(think its about 3.50 a week?) and will have a button on her person she can press and has given the company 3 keyholder details who can get to her in under 30 minutes(2 within about a minute probably), this will give me some peace of mind whilst i am out. I think she has got it free for a months trial.

Ollie