Hi, It is a little late now and I am feeling a bit lost. My wife and I have been together for 23 years and she is my world. she is only 43 and we were told today that she has MS. For the last two weeks she has had optical neuroses and lost her sight in one eye. She was admitted today for three days to have IV steroids to help fight the infection I think. She is being so brave and I am putting on a brave face to support her but I am so scared that I lose my best friend and the mother of my three children. We have had our ups and downs in life but I love her with all my hart and I am scared of losing her so much. I always thought I was the tough guy and nothing could hurt me but the first time in my life I am so scared. I am only on this site because I was trying to find out more information about what she must feeling and going though. Like most couple we go on in our life’s thinking nothing can touch us and we are on top of the world then this. I am asking myself why and what have we done wrong and I don’t know what to say to my children? I have told them everything is fine and the hospital is only trying to get her eyesight back. Sorry if this is a little long I just needed to get this of my chest. Mark
Hey Mark, Not long at all - don’t worry. You sound like a really nice man and an excellent husband who truly loves your wife and wants the best for her. I really feel for you being so scared as it is frightening, and after with no answers. It will be an emotional roller coaster for you both trying to understand and accept what is going on. There is excellent information on this website. There are stages your wife and you will go though including anger, denial, acceptance - and one I forget. I would advice you not to just do,blanket googling on MS as you will get information overload. Some things you find may be quackery. However 1 piece of really useful information is NICE guidelines to MS. Everyone’s MS is different. You will not know how your wife’s will turn out. Fingers crossed it may stay mild. Neither of you have done anything wrong. Nothing you could do could have prevented your wife’s diagnosis. It is really important to get your wife the right medication to manage her symptoms. To get on Disease Modifying Drugs - DMDs ASAP. NICE say you need to have 2 clinically significant relapses first. Touch base with a MS nurse. Phone your local hospital to speak to them and self refer. There may be a local course for people newly diagnosed with MS. usually 6 weeks covering different topics. Can’t comment on what to say to children as I don’t have any. I have been going through a really difficult time recently - MS and work. What I have found incredibly useful is to speak to the Samaritans to get it off my chest. I always feel so much better after speaking to them. It is a misconception you have to be suicidal to talk to them. Totally untrue they are fantastic. Please do use this site for any questions you have as the support and advice is excellent. Keep strong your lives are just taking a different route Hugs Min xx
I’m sorry to hear you have had bad news, and I understand it must be a shock, and scary.
But a few things to clear up from the start: Number 1, MS is NOT a terminal illness. Most people with it have a normal or near-normal life-expectancy, so there is no reason to expect you are going to lose your wife to MS - soon, or at all.
I was diagnosed over 3.5 years ago, in my 40s, like your wife. If I’m completely honest, there’s no mistaking I’m not well - some days worse than others - BUT, if you saw me in the street you’d never guess. I’m not visibly disabled, and certainly not at death’s door. I live on my own, and am still completely independent. I just have less strength and stamina than most people my age, and get a lot of cramps and aches and pains. MS is highly variable, so I’m not saying this will be exactly the same for your wife, but she may have different things she also learns to live with quite well.
She has probably had optic neuritis (not optical neuroses), which is inflammation of the optic nerve. To be clear, MS is not any kind of infection - your wife didn’t catch it, neither can she pass it on to anyone. Steroids should help dampen down the inflammation (of the nerve), but they’re not fighting an infection.
Most people recover significantly from an attack (e.g. of optic neuritis), and it’s possible to go months or even years between attacks, with nothing very dramatic happening.
If attacks - also known as relapses - are more frequent, your wife may be offered drugs to try to reduce the frequency or severity of them. These all used to be regular self-injection, but there are some new ones about now, in tablet form, so your wife may be offered one of those instead. It all depends how aggressive they think her MS is, and how often she is relapsing (having episodes). The usual rule is that you must have two significant (major!) episodes in two years, to be offered drugs to control it. If the attacks are less frequent than that, or not considered major enough (optic neuritis would be major I think), there may be a “wait and see” approach.
This is going to sound a rather strange and silly question, but are you quite sure your wife has been diagnosed - e.g. have you seen a letter with it in black and white? The reason I ask is it’s unusual to get a confirmed diagnosis after just one attack, even if it’s strongly suspected. Often it is diagnosed as possible/probable MS, but not confirmed unless there is a further episode.
If there’s no doubt about the diagnosis, you may want to check any insurance policies (mortgage protection, critical illness) in your wife’s name sooner rather than later, as there’s a chance you may be able to claim, but there’s often quite a tight time limit from diagnosis, so it doesn’t pay to sit around.
Once again, I am sorry about the news - but it doesn’t have to be the end of the world, honestly. Yes, life will probably be different to how you’d both imagined, and throw up more challenges, but it isn’t the end.
I expect my dad had a lot of fears when mum was diagnosed. At fifteen years old and with very limited knowledge of the condition, I definitely freaked out. But the thing is, the only thing that’s changed in twenty one years is the addition of a wheelchair for outdoors. Mum is still my mum, still Mary to her friends and still as much in love with my dad as ever. The wheelchair, named ‘Christine’ because it has a mind of it’s own, is just an accessory.
I’ve never replied to anyones post before, but I thought I may be able to help because I was diagnosed with MS last July and although I knew I’d be alright, it still frightened me - in fact, I’m still coming to terms with it. Thank heaven for the nurse with unending patience!
But one thing I know, from my experience as a family member and as a patient, is that I did nothing wrong. Nothing. Neither did my mum and dad and neither did you or your wife. MS isn’t choosy, it’s not biased and it’s not vengeful. MS is just a condition and it doesn’t change who a person is. Your wife will still be the same person regardless of any accessories she may end up with and although you both may need to make a couple of little lifestyle and home adjustments down the road, why worry about that right now?
As for telling your kids, mum and dad told us over the dining room table, with a glass of wine in each of their hands and a cup of tea in ours. When they were done, they let us ask all of the questions we wanted and they were honest, but reiterated that it didn’t mean anything had to change - at least not for a long while.
My point (and I really do have one!) is that the diagnoses sucks. But is your wife any different today that she was before it became official? For your sake as much as your wife’s, try to have hope. MS is not the end of life as you know it.
One last thing - Please don’t go surfing the internet about MS, it’ll only freak you out because you’ll only see extreme outcomes and negativity. I strongly recommend you stick to websites like this one and read the booklets your wife will be given by the docs. They’ll help you out a lot more than random postings online.
Best of luck for the future. x
It sounds like your wife’s had whirlwind diagnosis and you probably both fee like you need the clock the stop for a while.
Has she had symptons before or has this come completely out of the blue?
Hi Mark, a bit like you August last year was dx. couldn’t get our heads round it at first and I think we both still struggle now. It came completely out of the blue, had numb right hand side for a few weeks, saw neuro at hospital admitted there and then for a week, MRI, LP whilst in and then back 2 weeks later and then the bombshell. From what we have read it can take quite a while to come to terms with, and the partner is trying to be strong for the one with dx, but you and everyone needs to remember it’s not just the person that’s been dx, but the whole family! My only advise would be to take all the help that is offered, write down any questions that you need answering and get a good MS nurse that you can really open up with. We are now 10 months down the line, and only just understanding the condition. Take your time, be there for one another and remember you can always come on the forum for a chat or a rant which ever you both need at the time.
You and your wife are going through a stressful and scary time but you’ve found an excellent place to share your fears and ask your questions. Elsewhere on the MS Society website is all sorts of useful information and advice and your wife should be given access to a specialist MS nurse, who will be able to offer support and advice.
The MS Society produce a range of publications, accessible via the Support tab at the top of the page. Many of them are downloadable and there are some aimed at young people and at helping parents explain MS to children. I particularly recommend the one called ‘What is MS?’ to you: my husband and I both found that very helpful when I was diagnosed in January.
MS may restrict your wife’s ability to do some things but you will both adapt and adjust and she will still be there, the same person you married, sharing the good times as well as the challenges for a long time to come.