Dh has just been diagnosed with MS

[sammac]

and I'm looking for ......I don't know? Positive stories, advice, hope.

It's taken us by complete surprise as he really is my Mr Incredible and can do everything. But the symptoms have been put together by a neurologist, and he's had tests, and it's been confirmed.

I don't know what to do next. Have got information from the MS society, which has been useful(well apart from the adverts for wheelchairs, but we've ignored that) Don't know anyone in the same boat.

We're trying to be positive(mostly) and I know that there are a lot worse things around, but I think that I need to write this down at least. So bear with me on this.

Hi Sammac ... my mother was diagnosed with MS in 1990 and has so far refused to acknowledge it
She is disabled but she has other issues that, in her opinion, are the cause of that (she has a replaced knee, replaced shoulder, fused vetebra in her back - nothing to do with MS)
She was first diagnosed on the results of an eye trace and for a long time she believed that it was a misdiagnosis. About 10 years ago she had an MRI which confirmed the diagnosis but she still insists on believing the doctor made a mistake. She sees her GP regularly (on account of her other issues) and although he has MS on her notes they never discuss. She won't be involved in the MS society (she said they are miserable) either.
Although it is all a bit strange that she won't acknowledge her condition I believe that it is partly the reason she is doing so well and has had no real 'episode' (can't think of a better word to use) ... she has the most amazing power of using positive thinking on this issue and I am sure it is doing her nothing but good. She isn't in a wheelchair but does use a stick (due to her bionic knee)

Hope that helps

Dear Sammac, I'm so sorry you've had this news. but please don't panic. I was diagnosed when pg with dd1 in 1999. Since then I have had very few relapses (about 2, depending on your definition of a relapse) and am generally in very good health. I can't cope with heat at all and I have permanently lost some sensation in my feet. Other than that I am very fit and healthy. I run regularly, I work 3 days a week and run round after dds (6 and 4) the rest of the time.

having said that what you and your dh are going through now, was for me the hardest bit. I felt a bit like I needed an instruction manual on how to react, emotionally. That sounds very detatched but I really didn;t know how to feel, how I "ought" to feel. I didn't know whether to scream and shout, I didn;t know how to be with my dh and my friends, whether to talk about it or get on with things. I didn;t know how other people wanted me to be. It was a horrible and frightening time. It's difficult for me to generalise as I have been lucky so far and my ms is mild - but maybe it helps to realise that this is possible. if you or your dh want to cat me do feel free. issymum was very helpful to me in the past too. My number one pratical tip is to stay on top of the consultant and hospital - tell them you need a direct line to someone to ask questions. when I was dx there was no such thing as an ms nurse and I was very unsupported. I even fell behind a metaphorical radiator for a couple of years and had nothing at all from them. don't let this happen. make sure you get all the info you need. It may help your dh a lot if you can go to appointments with him - at least at this stage - it's all very bewildering and an extra bod to remember all the questions (and the answers) is a very useful thing.

Sorry to hear this Sammac, my sis has it, was diagnosed about 8 years ago and is relatively well still.

The MS trust is a smaller charity than the MS Society (website is MStrust.org.uk). They have some really good practical leaflets and booklets about various aspects of living with MS.

Oh shit Sammac - sory you've had this news. I have no direct experience of MS but I just wanted to give my support and let you know you are in my thoughts.

Hi Sammac, it must be terrible for you and DH

I have had MS for just under 10 years, was diagnosed at 23. and on the whole I'm doing well. I have a DH (lovely but a bit useless at times) 3yr old DS (gorgeous but hellish hard work) some good friend and a set of in-laws who offer lip service but seem unable to handle my flare ups, ah well. I'm still walking, seem 'normal' and it has impacts on my life but I try not to dwell on them. The neurolgists have said I'm too well for the disease modifying medications.

My 1st thing to say to you and DH is DON'T PANIC When I got the diagnosis I thought 'that's it, end of life, wheelchairs, having my bum wiped' etc then I got info from the MS society and realised it doesn't have to be that bad. I also thought DON'T GIVE UP I'm mid 30's now and if I'd thrown in the towel I'd have had a long time feeling sorry for myself and as this disease doesn't have the decency to kill you, an awful lot longer to come being maudling.
My GP told me to learn to accept it as part of your life. So I don't have MS, I have Boris, a malevolent black furby who lives in a box inside me. Sometimes he gets out and causes havoc and he can have those days but I can say 'stop it, your not having this one' and shove him back in his box. He's like the mad old bat in the attic! I WILL NOT BE BEATEN BY A FURBY. Yeah, I have bad days but I'm lucky as I get better.
Well that's how I deal with it.
Every MS patient has a different set of symptoms but we do have some symptoms in common. The MS society can provide info on them and they give great support. Also they can provide info for families and employers about MS. I'd also advise that you demandhelp from the GP or consultant. After 9 years I am about to see an MS nurse for the 1st time! Basically I got a diagnosis and that was it. I wasn't aware of the things available for me.

For you and DH, it's a huge shock, new and scary. I wish you both all the strength to deal with it. If you want to get in touch, feel free to mail me

hi there mummymonster. shocked to hear your experience re ms nurses - my experience was similar - diagnosis from a patronising consultant who told me not to worry and get on with my life. No-one ever said "if you have any questions of worries this is the person to call...". I think the consultant really did think I was going to go away and not worry . I was also the kind of person who felt guilty about using nhs resources. hence no support at all for the first 2-3 years. thankfully my hospital now has an MS nurse and she gives out her direct line and can refer you for further appointments etc. Sammac - please pursue this with your dh. If his experience is at all like mine he may notice new symptoms that are not in themselves a big deal - tingling and numbness in new places, for example, but I certainly worried myself sick wondering if this was something I needed to tell someone about, something that might need treating cos it had longer-term implications etc - but there was nobody I could just phone and ask. These days I think there usually is - and its usually an MS nurse - but make sure you find out.

Hi Sammac,
This must be a difficult time for you - so much to take in. In one of life's weird and horrid coincidences, both my mum and mil have MS, diagnosed six months apart. Having two family members with MS really brings it home to us that although they both have the same condition, it is unique to each person.
MIL has probably had relapsing / remitting MS for 20 years with odd symptoms that ebb and flow. It is only in the last year that it has become progressive and started to impact more on day to day life. Mum's MS symptoms started about 4 years ago and were progressive from the start. Each one seems to find a particular symptom more problematic than anything else. MIL has neck and balance trouble whilst mum's legs are badly affected. Both now need wheelchairs to get around outside the home but this is not the experience of every MS sufferer.
The thing that they would both say is absolutely paramount is to try and stay as positive as possible about life. My mum in particular makes every effort to keep getting out to see friends and try new things (like taking computer and art courses) which she says is so important because she could just sit in her chair all day. The MS is taking away her ability to walk, but it doesn't have to take away her right to a social life, IYSWIM. Both have been on anti-depressants to cope with the down times - I think depression is a very common "side-effect" of any chronic illness and should be taken seriously.
Arm yourself with as much info as possible. Always badger the specialists for info on possible new treatments. Take any and all help on offer. Get good advice on any benefits you may be entitled to. ENJOY LIFE!!! MS is not a death sentence.
(Sorry it's so long and hope it helps in some way {{{hug}}})

Thanks to all who have responded.

I have printed this out for dh to see. He needs some space and time to come to terms with this, and is going to take some time off work next week. I think I will let him read it then and check out the links you have given me. It's nice to know that the support is here when it's needed.

Hello again Sammac

Yesterday I had my 1st meeting with a MS nurse. It was wonderful to talk to someone who understands and I suggest that DH asks for his own MS nurse. She had info on how I and my family can handle this and even said she would send abook that DS (3) may find helpful.

I really want to pass on what she told me...'the majority of my patients are like you' basically they don't fit the percieved imagge of what you imagine a MS paitent to be like.

I also want to pass on this site that she recommended as yiu may find it useful www.mswebpals.org/ it's called Jooly's Joint.

All the best to you and DH