Experiences of Multiple Sclerosis

[Tillyscoutsmum]

My lovely friend has just been diagnosed with MS. She is understandably, very upset and has been googling (always a bad idea !) and has been reading all about the worst case scenarios. She is very active - does lots of sports etc. and is convinced that side of her life is over

I have no experience of MS but would really like to be able to try and make her feel better, if at all possible.

Is any one willing/able to share any positive stories ?

Thanks for the link-I've not come across that site yet and may be useful in the future!

Hi Tilly

Hope your friend's appt with the neurologist goes OK. It might be that there is an MS team involved with care - MS nurse, pysiotherapist etc. The MS nurse is often a good source of help and advice and can be called ad hoc unlike necessarily the consultant. In our area some months after diagnosis they held information sessions with others recently diagnosed which helped. It depends what her health trust does. I am in Scotland where the prevalance is higher anyway so I think that might be one reason why the care is quite good.

She has got a good friend in you. One of the problems I found in the early days was who to tell. It was very much on a need to know basis at the beginning as I had nothing overtly wrong with me. There's no need to tell everyone at once and it might be that she needs you to help her with this. It was a couple of years before I told my parents and that was the right thing for me.

How old is her DD? Mine were quite young when I was dx. As my walking got more and more difficult we told them that mummy had a problem with her legs. They need to be told at some point if symptoms delvelop but again, you can tailor the infomration to the actual child.

x to you and her.

I was diagnosed last week ( first time I have said that )

If she feels anything like me, she'll be scared, confused and pretty pissed off.

But she'll also be glad to have a friend in you. Just tell her you're going to be there whatever happens.

It feels like a death sentence the first few days but I'm reading more hopeful stuff everyday. I am also a single mum. I hope she comes to terms with it and gets all the help she needs x

My DH has MS and sadly has a very aggressive type - he went from first symptoms to diagnosis in 4 months, and 12 months after that was using a wheelchair much of the time BUT (and here comes the good bit) he was lucky enough to be referred onto the campath (aletuzumab) trial in cambridge and 4 yrs on he rarely uses his wheelchair. He suffers badly with fatigue from time to time but essentially we are in a far better place than we ever imagined. What I want to say is that even when it seems hopeless and awful things can turn out so much better than you expect

looking back we went through a bereavement process at the time of diagnosis - DH was grieving for the good health and active rugby playing future he expected, I was grieving for losing my healthy hands-on DH, and we were both grieving for the perfect family life we all thought we were going to have. Clearly it takes time but once we had accepted that things would be different and let go our expectations then things got a lot easier. LIke another poster said - wheelchair info and other stuff is helpful but it has to be at the right time.

it's so lovely that you are there for your friend - all I can say is please continue to be there for her.

forfestivesake what a shitty time of year to get news like that :( we are out here if you need us :)

I have a family member with MS who despite having been hospitalised several times (including a very very scary moment when they lost their sight temporarily) is now living a perfectly 'normal' life. Has to be a bit careful about not overdoing it, but at the moment (touch wood) that's about it.

TBH after several years of trying to work out what was wrong, MS seemed a hell of a lot less scary than some of the alternatives that were being floated by the docs (brain tumour was at one point "almost certainly" the reason for the symptoms, not a nice thing to hear)

To me the scariest thing about MS is its complete unpredictability. But it is not a death sentence. And the drugs etc do seem to be improving rapidly.

The MS Society website has lots of resources both for newly diagnosed people & their friends and family which you might find useful.

We also got our health insurance through the MS society as they can refer you to underwriters who don't exclude MS for family members automatically - might be worth bearing in mind.

seashells Thanks :) It is a shitty time - that's why I haven't told anyone yet. I really don't want it to be the focus over christmas.

Plus - it's bloody hard admitting it to myself right now let alone telling people. I almost asked MNHQ to delete my last post as I was surprised I'd even written it!

Tilt - I hope your friend is doing ok.

I got double vision and the whole work up this time last year so I can empathise. I couldn't hide it from people as I had paralysed eyes (not subtle!!) although that's my only major symptom and has since gone, I'm in denial as a ms dx is only made after multiple events, but things are v v likely ms. it's the unknown and waiting that's horrid-I think that's why I always say IF it is-my ability to deny problems I've had in the past year is impressive.!

I didn't have any major symptoms - it was found by accident looking for a hereditary condition that seemed the most likely cause.

My eyes don't seem to be effected thankfully!

My main thing is the exhaustion and some pain / pins and needles / burning sensations on my skin. Very bizarre!

I guess things things are easy enough to keep quiet about so until it's obvious to my family that something is wrong I'd like to just be normal for as long as possible.

ForFestiveSake - so sorry you have had the diagnosis as well

Hope you all have as symptom free Christmas as possible. Thank you again