multiple sclerosis diagnosis any help out there?

[rubyroo]

my dh has just had a diagnosis for ms and i was wondering if any mumsnetters had any advice for us? he's not been offered beta interferon and i'm feeling quite stressed about that. he's on a short course of heavy duty steroids and is starting to feel a bit better. i know this sounds selfish but mentally i'm a mess i keep bursting into tears when i'm on my own and am finding it difficult to sleep am so worried about him and out future together as a family. mn has never let me down so am hoping people out there can tell me what we need to do next

Hi rubyroo
There is a lot of help out there, and it is normal to feel worried and anxious. Yes, your dh has the illness but you have to cope. Its probably early days but try and find out the type of MS he has. Do you know yet?

No advice, I'm sorry but just wanted to offer my sympathy, and even though it's your DH's diagnosis it's natural for you to feel worried about the impact on your family. I hope you get the help that you need.

they think its relapsing remitting he's got 8-10 patches according to mri scan but say he needs to have 2 relapses in two years before he qualifies for beta interferon but from what i've read on the web the sooner he gets on it the better? he's got quite a bit of memory loss and we can't agree on the symptoms he's had he's trying to pretend alls well etc and he put on the same act for the neurologist but i wanted him to be more honest and fight a bit harder for some treatment then i feel guilty because its his condition. what can we do to convince them to give him beta interferon? or am i over-reacting? we're waiting to see an ms specialist neurologist.

Again I think its normal for DH to react this way, he is trying to protect you. I would also find out about disability living allowance. Its a big emotional step to make but can make a big difference to your life. My mum had MS for 18 years, and with the relapsing remitting type you get periods where the symptoms are minor.

Do go back to the GP and MS nurse and ask help.

he's just got a new (much better) job its his dream job basically and hes worked really hard to get it he hasn't disclosed as theres nothing to stop him from doing it yet. we're in the middle of v expensive building work to our house which means we've had to move out for a while but now it just seems stupid as its a typical 1930s semi and not suitable at all if he does develop mobility issues. but really i want to know how hard we should fight to get onto beta interferon now at early diagnosis?

It does depend on the type of MS he has. If it is the relapsing type then it is worth fighting for, if is the progressive type then its not any help.

Hi there. Sorry to hear your news. Ask your gp for a referral to an ms nusre they are invaluable for support and help. Have you got an ms centre near you? My friend was diagnosed with r/r type nearly 5 years ago.To start with she was understandably devastated but is now more positive and happy than she ever was before. She is now on beta inferon and thinks it helps but was not on it for a long time after diagnosis. She says she has found the alternative practices very useful and extremely beneficial,i.e. acupuncture, reflexology and pilates. She now goes to the centre most days for one thing and another, they ar eexcellent in terms of meeting people in the same situation and someone will have always been there before you, so can always help. Oh and she has oxygen therapy every week. Nutrition as very important and I think there are several books around that point you in the right direction. Her consultant believes that she had her first "attack" almost 21 years ago and although she is slightly weaker in 1 leg now and needs a stick occasionally she is no different now to how she was then. Hope that helps you a bit.

we think its r/r but they said time will tell!! not v comforting! am going to get onto ms nurse referral asap not sure what you mean by ms centre? theres a place nr rotherham that offers complementary therapies. the thing is dh is not a fighter he tends to sit back from things whereas i'm a scrapper and will fight to last its causing a bit of tension as its not my fight. but i can't step back

Rubyroo

I know the PC thing to say is everything will be OK, but life can be a bit cr*p with MS. You are right to fight, because in way it is your fight but I don?t want to give you false hope. It took our family ages to come to terms with it and it maybe that DH has not accepted it yet. Getting help is all part of accepting the condition

Mum didn?t want to take pills, looking back I wonder if it would have made a difference but like you say it is their choice and I?m not sure that adding stress would have helped.

I?m not sure what an MS centre is but we did mum did go to an MS Society run club. At first she found it depressing as you could see what the future may hold by looking at other people so you have to mentally ready for that. Perhaps a chat room like this is better to start off with as DH can be honest about his feelings without upsetting anyone.

During the early stages she found keeping active very important. Making changes to the car i.e. getting an automatic, having eyesight test. We were all quite shocked what a difference MS had made to her eyes so that all helped with the day to day life.

I am sorry if I sound blunt it is not meant that way but I found tea and sympathy very difficult to deal with. I hope this is of some help. Keep asking questions as I am sure there are other MNeters out there who can help.
JD