Partner Recently Diagnosed, Any help / Guidance...

Everyday living
1

Hey, posted in another area, but saw this forum was a lot busier!

My partner, who is 27, has just been diagnosed with MS (24/01/14), after a MRI scan. It was a bit of a weird way in which it came about, as she suffered, what I’ve come to learn as a very typical symptom in numbness / Pins & Needles, however, that also coincided with an increase in gym work. So as well as being referred for a MRI, we also sought help from a chiropractor. The work with the Chiropractor actually relieved the symptoms, so we both thought the MRI results were going to show nothing, but then the Neurologist, in a calm and clinical fashion delivered the news that she had MS.

As she was only diagnosed a few days ago, we are yet to meet with a MS specialist to discuss it in further detail, and to find out what type of MS she has, treatments etc, but safe to say, the diagnosis has completely knocked her for 6. We are polar-opposites in our approach, as I am a complete Optimist, whereas she will always err on the side of pessimism. It is this that I was hoping to get advice from others, as to how to first accept it, and then how to deal with it in the longer-term.

I know it is a very unpredictable condition, and no one can say exactly how it’ll effect her specifically, but any help, guidance or advice is appreciated.

Also, it would be great to hear from partners of people that have MS, as to how you provide support to your loved one? I have made it absolutely 100% clear that no matter what happens with MS, it will never come between us, or effect my love or commitment to her. The only thing I’m worried about, is that I have seen there is quite a high percentage of people who suffer depression after a MS diagnosis, and anythign i can do to keep the mental side of things positive, means we can tackle any physical effects if / when they arise.

Thanks for reading and for the long post, and help is really appreciated :slight_smile:

Dan

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Hi Dan, Im sorry to read how this beast of a desease has gatecrashed your life. I daresay youll get a lot of replies on this subject, as it is such a common problem. Thew way you deal with diagnosis initially, can have an effect which could go several ways.

At first, you are in shock…how long was your wife having problems?

If problems were around for a long time and MS was suspected, it can still hit a lot harder than you imagined. Hearing those words can be mind numbing. Then of course, it doesnt help if the news was delivered awkwardly and not enough information was offered at the time.

Getting such a life affecting diagnosis, needs time to sink in. People around you (you for eg), can only imagine how you are feeling…you might not even know yourself! Mixed emotions can make you bad-tempered, sad, quiet, all sorts of feelings.

Your wife needs to know what type of MS she has and what, if any meds are available to her. She may not actually need anything yet.

Can I give you a tip for later on? This is going from my own expereince and outcome. It may never happen to you, as your wife may be able to manage things herself.

My hubby did all my personal care…this proved too much and I wish I`d got carers in sooner.

I felt we became carer/patient instead of husband/wife. It did affect our relationship, which has never recovered in that department!

I`ll leave it there for now hun, and just wish you and your lady all the best.

Dont panic…life with MS can still be a very happy and useful life. This forum is living proof of that.

luv Pollx

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Hi Dan,

I commend you for wanting to support and help your partner.

However, just as the disease itself is hugely variable, so is the way in which people deal with their diagnosis. There is no way she “ought” to do it, and it’s not even necessarily the case that you “ought” to be trying to keep her positive.

Diagnosis with a serious illness can be compared to a bereavement. If your partner had just lost a loved one, would you even be talking about trying to keep her positive, or would you recognize that she needs to deal with her loss in her own way, at her own pace, and that trying to keep her “positive” may not only be doomed to failure, but actually inappropriate? I think there’s a difference between clinical depression, and natural grieving, and anyone who’s going through the latter (for their life that was, for the future they imagined they’d have, but which will now be forever changed) might not welcome pep talks from someone who admits having the polar opposite approach. There isn’t much of a positive spin to be put on MS, I’m afraid - at least, not from the point of view of the person who’s just learnt they have it.

Of course there’s the old: “It might not be as bad as you think; it might NOT be worst case scenario” - and for a lot of people, that will be true. Very few people get ALL the possible symptoms, and certainly not all at once, and most learn to adapt to the ones they do get. But it’s the not knowing that’s often the hardest part. Saying: “But not everyone ends up in a wheelchair!” is only comforting to about the same extent as telling a bereaved person: “Well, at least their suffering is over now.” - i.e. there’s some truth in it, but it’s not going to make them feel massively better, as if they’d been viewing things the whole wrong way.

An MS diagnosis is a big deal, and feeling depressed about it is not a “wrong” reaction, that needs to be nipped in the bud.

Having said that, your partner might not react with depression at all - not everybody does. It’s just important to remember that negative reactions to bad news can be completely normal and healthy - not something we must fight hard to avoid. Having a goal of keeping your partner positive may be unrealistic - both for herself, and for you. She may resent attempts to coax her out of her natural grief and fear, and you may feel frustrated you can’t do exactly that.

Imagine the roles were reversed: you’ve just lost someone (equivalent impact), and she reacts by encouraging you to be positive. Does that feel helpful, or completely beyond you at this time?

Tina

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Hi Dan,

I agree with Tina, how your partner will react to her dignosis,is as individual,as her ms will be, but i think i am right in saying that she will go though a lot of emotions,until she gets her head round the diagnosis,i liken it to grieving,grieving for the loss of life as you know it,i thought i was prepared for my diagnosis,because i was in hospital with a lot that had MS.and i sort of had an idea,but how wrong was i, when i did get the diagnosis,i collapsed in shock,my legs went from under me, and a nurse had to help me up,and i made a wailing cry,so she took me into a side room until i calmed down,that was 22 years ago,and i remember it as if it were yesterday,it took me a good 2 years to come to terms with it,i went through shock,denial, anger,sadness,you name it i had it.but slowly i learnt that my life wasnt over, i just had to adapt,the best way i could,

hats off to you too, for being very supportive,that helps a hell of a lot,her just knowing you will be there for her,is half the battle. x

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Hey,

Thanks for all the replies, it’s always good to get differing opinions!

Poll, the diagnosis was appalling - the neurologist basically said you’ve got MS, i’ll refer you to someone, and ushered her out of the door. No information, no time to ask questions, nothin. Just a bombshell, and goodbye. Thanks for the ntoe around trying to differentiate a carer / patient relationship from being loved ones, it’s certainly somethin I’ll keep in mind - fingers crossed it never comes to that, but something to consider if it does.

Tina and MrsJ, thanks also for your replies. I absolutely agree that diagnosis could be compared to a bereavement, and everyone will react in different ways to news like this. I have also said to her that being sad / angry / scared / confused will and are, all normal emotions to feel. I can feel already, for both of us, that probably the most horrible part of MS, is the not knowing, and we certainly need to get a diagnosis as to which kind of MS she has.

I agree diagnosis IS a big deal, of course it is, it’s with you forever. However, i don’t necessarily agree that trying to keep her positive would be inapproproiate / doomed to failure. Yes, she absolutely needs to come to terms with MS in her own way, and with the support and love of our support network, but, I don’t feel that being allowed to consume yourself from within about the possibilities of what it may or may not do to you is also a good way to go. Maybe that’s just me being selfish - and something I have to adjust my own mind-set too.

Apologies if the above comes across “trying to pick holes”, just wanted to voice my opinion, but i really do appreciate everyone that has replied, it cerainly gives me food for thought as to how I try and support her, as well as opening doors about how both of u accept different ways of coming to terms with it.

Thanks,

Dan x

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hi dan

until she sees an ms specialist, she will be very confused.

i have daily injections which i insist on doing myself (copaxone)

there are other things to try such as LDN (not on NHS)

further down the line it will be good for her to go to an ms therapy centre.

partners are very welcome too.

i have hyperbarric oxygen therapy at mine.

make sure she has enough vitamin D - ask gp to test for this

also B12 is a good indicator. i get monthly injections. - again ask gp

i like to have things to look forward to - cinema with a friend, tickets to see a good band (elbow in april) or even a weekend away.

good luck to you both

carole x

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hi Dan.

sorry you have had to ask about this but you can be comended for this. well done for being so level headed about your partners DX. its a right bugger to me the way people get dropped the bombshell with little to no advice and support given at the time. i think this is a big problem that the nhs needs to address.

all i can say is have a look on this sight as theres a section which provids free books all about ms. it was a godsend to me when i was first DXd. another thing i will advise is dont look too much into things on the internet. i did and read some things that just made my state of mind much , much worse. you will be a back bone to your partner and she will need all the support you can give. things do settle down in time. how long that takes is an indervidual thing but life does go on and things do get better.

i wish you all the best and well done for coming out and asking.

atb MTT

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yes you are so right its very important to remain positive, and not dwell on what might or might not be,i always remained positive by living in the present,and not to worry,i always told myself if things ever did get bad, i would deal with it IF it happened,and its worked very well for me over the years.

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Hello Dan

My partner was diagnosed nearly 9 months ago. Like you, I have done my level best to convince him that i will always be there for him. I believe its important to keep reinforcing that. I know in my case that he’s only finally beginning to accept that and I say ‘beginning’ because there is a long way to go but obviously everyone is different. We went From spending most of our time together and talking about marriage and our future before he was diagnosed to long periods of distance after the diagnosis where he would isolate himself when he will feeling very ill, but mostly becaue he was pretty depressed. Things have started to improve in that respect but the major thing is that he won’t let me see him ill and he refuses to talk about it. He says he won’t be a burden. it has been an emotional roller coaster for both of us. I’m telling you this because when he was first diagnosed, all I could think about was supporting him and how it would not affect our relationship. It does and it has but it hasn’t changed the way I feel about him and he knows that. I think that its important to be prepared for the impact it could have on your emotional health as well. You will need to be strong. I am an eternal optimist and always have been but I have had to learn that I have to accept his way of dealing with coming to terms with having MS and he certainly hasn’t yet although I can see how far he’s come. I used to think that I was selfish for feeling upset at being shut out when all want to do is ‘help’. I was finding it quite difficult to cope with and this wasn’t helping him. I took the massive step of talking to a counsellor who has helped me understand that his periods of isolation is one of his coping strategies. She has helped me understand that he may be scared of depending upon me too much in case I run. It took me a while to accept that but I can see that it is the case. Importantly, she has made me see that I am not being selfish. It is not wrong to care or feel hurt. It is how you deal with it that matters. I don’t mean to go on but the point i’m trying to make is that your partner may react or behave in ways that you least expect. I’m sure you will support her. You sound lovely. I have found so much solace in reading posts on this forum from so many wonderful people. It gives me strength when I’m feeling low and helps me understand what he is experiencing. I hope some of this is useful. Best of luck to you both.

Beryl x

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Thanks again for everyones responses!

MTT, i hugely agree with ou on the diagnosis process. The Neuro literally sat don, said “there’s no easy way to say this, you have MS”, which was followed up with, but I also want to run some tests for Lymes, Syphillis and any other conditions that mimic MS. That in itself I thought was poor practice.

How can you diagnose someone with MS, andin the same beath, say we aretesting for other things as well??

Then, it was a case of getting herut the door as quick as possible. Absolutely zero information on, what type of MS she was likely to have, on MS itself, no chance to ask any questions, or ANY advice provided at all. He said it would be 3 months before a specialist was likely to see her through the NHS. There was absolutely no way we could wat 3 months in complete limbo, with no advice at all, so we’ve gone private to speed things up, and just waiting for the date to come through now.

Beryl,

Thanks for your message, it’s great to read someone’s experience from a partners perspective! I agree with you, that it’s important to reinforce how much you love someone, and that you’ll be there for them. I’m well aware things could / will happen that will certainly test us, but, I would like to think that we could withstand almost anything!

Thanks again for everyones help!

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Ur partner is very lucky to have u. My husband of 11 years moved out the week before my first attack. Ended up in hospital we’ve a 4 yr old and 12 week old baby and a mutual friend asked how I was and his reply how would I know we’re not together any more. Ur family obviously brought you up to be a caring person. Hope you get some answers soon. I was only dx November. My dads came with me to all my appointments and sometimes with ms there is now amswers. She didn’t rush us but just couldn’t answer some of the questions. X

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Hi, I’m recently dx myself so not got lots of advice. Just wanted to say its really thoughtful and supportive to have posted here. I hope it all works out L x

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Hi dan I have ms myself and only 21 and was diagnosed last April via about 5 lumber punctures and a couple MRI scans as my ms is aggressive but your partners ms the treatment she may need maybe only tablets she will probs be put on bacHlafen and gabapenton for relief although there are many treatments for ms I was at a living in wellness group which consulted of tai chi and mediatation techniques it helped a lot relax and also helped notice symptoms so that may be a idea to calm your partner and yourself down ino when I was diagnosed I wanted to no everything about ms but I was given books about ms while in hospital but your ms specialist will give you books on it another idea is to find out where and when the next newly diagnosed group is as not everyone’s ms is the same but your partner will realise she’s not alone in the matter and she might meet a friend that she can talk to and they will under stand I hope that helped you :slight_smile:

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Hey Dan

That was a very unprofessional whay for a neuro to give some the news that they have MS and I am sorry to hear that she is finding it hard to cope with. She has only been diagnosed for a few days so she will need to allow time for the fact that she has it to sink in. She will go through the grieving processes of anger, sadness, guilt etc. these are normal as it certainly happened to me.

I was quite blase about it and it was a novelty for me when I was first told of MS and it took 3 years before I fully got my head round the fact that I had MS. Give her time and space to deal with it in her own way but just be there for her and try to encourage her not to be pessimistic. You will need to be strong, as others have said, as it will put a strain on the relationship that you have with your partner. Many men can’t cope with the fact that their partner has a chronic condition such as MS and have to leave, you, my friend, are one of the rare ones, just keep on doing what you are doing, encourage her, be there for her when she falls and never give up on her. It will pay dividends in the years to come!

Andy