Forum

What do I need to know?

A couple of days ago I found out that my mum has MS.

She hasn’t been well for a while and I put it down to stress from work. She is very distressed by the diagnosis, and still in hospital. I am completely shocked and upset by the whole thing and the reality of how this will change her life.

I had never heard of MS until last week (ashamed to admit) and now I find myself confused with what it is. My mum doesn’t want to discuss anything about the diagnosis and I don’t want to distress her.

I want to speak to one of the NHS doctors to ask them more but what are the things at this stage I really need to know? I know there are different types, but not much more than that. They have said she will be in hospital for up to 10 weeks which scares me so much… as must mean the diagnosis is very bad.

What are the most important things for me to understand at this stage? Sorry know this is a strange question. Just reading the posts from others is so helpful but I wondered if anyone has any advice at this stage. My mum is 63 and up to last week was working and looking forward to her retirement.

Thanks,

Daniel I have started a reply to your post three times and I can’t seem to get it right, so I’m hoping someone else will respond to you.

I will say speak to the ward doctors and Nurses, if your mum doesn’t have a full recovery then she may need help with adaptions to her home, benefits etc. I’m sure this will be discussed at length over the next ten weeks and there will be people to advise you, if not go to Citizens Advice.

Hopefully someone will reply soon and give you more constructive advise than I have been able to give you

You could try reposting on Everyday Living, more people read that Forum.

Best wishes

Jan x

Hi, I dunno how much help I can be, but i will try to offer you my support.

I think it is quite unusual for people with MS to need hospitalisation and rarely for so long.

Also it can take quite some time to get a diagnosis. I wonder if your dear mum has been having symptoms for some time and kept it from you, trying not to worry you.

Diagnosis usually needs evidence of lesions and demylination by tests such as MRI, Lumber Puncture and others.

Although receiving a diagnosis of MS is certainly very scary, once the news has been accepted, there is a lot of help out there to make it a livable condition.

It would be a good idea to speak to the hospital social service team to get your mum and assessment of her needs at home,

I have received lots of equipment and advice from Occupational Therapists, physiotherapists, Continence Service nurses, district nurses and others.

I am also in receipt of Direct Payments. This is money available to pay carers, who help me with personal care and outings.

An assessment from social services is needed to initiate this plan.

I dont have MS myself, but was wrongly diagnosed with it for years, so I do have some understanding of the condition.

My condition does have a lot of similarities with PPMS.

luv Pollxx

Can you explain about direct payments. Can I ask Social Services to assess me for this. I have at last after waiting nearly two years had my P.I.P. sorted, but am now £14 a month worse off than before receiving it as the local council reduced my housing benefit.

I am using my mobility scooter twice a week to go to NHS Physio & Gym, but takes me an hour each way - often freezing cold and wet (4 miles away) and is not on a bus route.

Problem seems that whoever you speak to, you never get the whole truth. Last week. social services told me I was only entitled to an hour a day cleaning or 5 hours once a week. I only need help putting on fitted bottom sheets, simply cannot do it, but sadly sometimes several times each week. So I pay someone who lives close to do it when necessary. I do manage well alone, and don’t want other help at this stage.

Thanks Poll - Mary

Mary if you repost this on Everyday Living I’m sure someone there will be able to help you. I Dont have direct payments so I can’t offer any advice.

It is my understanding that PIP is NOT taken into account when applying for housing benefit.

Jan x

Hi Daniel84,

Sorry to hear about your mum.

This website is great for information, look at the What is MS? at the top of the page.

Do you have an MS nurse in your area? They can be very helpful at explaining things to both you and your mum. Ask the hospital, they should know.

Hope you’re mum’s out of hospital soon, stays well and can start enjoying the rest of her life.

Jen x