Multiple Sclerosis diagnosis, devestated and it's not even me

[ascouser]

My BF has told me this afternoon that she has MS, it's the remission recuring (!), the most common type.

She has told her DH, mum and 17yo DD and then me. She has known for a few months and is still trying to get her head round it.

We are 38 and we have known each other since forever. We are not the pally pally, tell each other everything type mates, but very good and old friends.

I've come home and done some reading up on it, but I feel devestated and in grief almost. I understand that this is initial shock and because I know very little about the condition or in fact I don't know anyone who has had it (apart from one distant person, who sadly died) I'm just V concerned.
Can anyone suggest next steps, tips or where else to seek advice or support or what to expect and how I can help and what not to say.

TIA

I had a similar situation. One of my oldest friends diagnosed with same MS a few years ago, she was in early 30s.

Has your friend had an attack? Presume this was how she was diagnosed.

I don't have loads of advice. I think there is a pretty wide range of severities - so maybe don't panic yet from your online reading. There are lots of drug therapies available now. My friend is on drugs and managing very well.

I think all you can do is be there to listen, follow her lead, take her out for a good night out and probably don't really treat her to differently (but again follow her lead on this one).

Sounds like your friend has a family to help support her too. My friend was single at the time, she worried no one will ever want her and not sure if/how she will be able to have children. Still she has dealt with it all very bravely and on the surface at least you would never even know there is anything wrong.

Big hugs to you. It is shocking to hear bad news about a friend and I think makes you feel very vulnerable to see someone your own age faced with such an illness.

thanks Daffodilly, really appreciate your thoughts.
It's that 'It'll never happen to us' stone a lot of us live under isn't it! I want to go all protective and go research stuff and give her info etc etc but i will not until asked and as you say 'take her lead'.
As I dropped her back at her car this morning and looked at her to say goodbye it was like there was a curtain in front of her with MS written all over it I hope I can draw that curtain back and look at her like I used to.

My dh was diagnosed a couple of years ago and the main thing he said is don't treat him any different and DON'T keep asking how he is. Assume all is well unless told or is obvious. He's said treat like someone with diabetes- most of the time it's forgotten about.

The worst person was his sister, gave no practical support, words or even came to see him. Just phoned up and cried- to me, and I was supposed to do what as I/dh were still trying to deal with it.

TBH we've hardly told anyone except close friends. Only told some people in work last year when he had a relapse and I was getting a bit stressed over it all.

Most of the time he's great but we just try to avoid anything major and try to keep healthy. There is some advice for taking a variety of supplements and some good books. Dh wasnted nothing to do with any official MS organisiations- when we looked at a magazine it was all wheelchairs and similar aids and I don't thnk that was a positive moment for him.

Just continue to be a friend and she'll talk when she wants to about it.

I have relapsing/remissive MS, I was diagnosed in October. There are far worse things to have to be honest, at least this one gets better in a way. I've not told my mother as she worries very badly and it will cause her a great deal of distress if I were to tell her, people think of MS as people in wheelchairs, unable to do anything for themselves but this often isn't true, some patients only ever have one episode/relapse. It is a little bit like a time bomb though, I never know what's going to happen. There is treatment which is designed to space out the relapses but the side effects are quite bad. I'm just trying to keep healthy. I hope your friend gets on as well as she possibly can Just be there for her.

sammac and Belle
thanks for you thoughts, duly taken on board.
Appreciate your time

Please do holler if you need some support

promise

I am 34 and was diagnosed in November 09 - totally out the blue. Had varying responses from friends. The most appreciated are the friends that will adress the MS frankly and without any sad emotion/upset. I know they are upset I but can't deal with that around me - I need positivity. It makes me panic if others are upset/crying around me as it makes me feel like I'm seriously ill. Also, try to understand that MS is largely an 'invisible' disease. Lots of my friends say 'wow- you look so normal' etc and yes I do look normal from the outside but boy do I feel it on the inside all the time, 24 hours a day.Sometimes it helps if you just acknowledge (in a calm understanding way)that yes things are shit for your friend. E.g. if she says her hands are numb (for e.g.)don't say oh I'm sure they will get better soon. Instead acknowledge that yes that is a pretty crap thing to have. Hope this helps, ascouser

keresley
thanks, appreciate your time and tips in your reply. Her hands are numb.. that was one of the symptoms she took to the dr's that has brought her to the diagnosis. Positive is what I shall remember to be.
thanks again.