Boyfriend and MS

New diagnosis and before diagnosis
1

I have been going out with a wonderful man for the past two and a half years. We are planning on moving in together in a couple of months time and having a bright future ahead of us.

I was at his flat today and I noticed a letter on a shelf dated early May. It just caught my eye and (without moving it) I read ‘blood tests’. I asked him about it when he returned to the room and he said that he also had had an MRI done and has suspected MS. Shocked FrownHe’s quite sure it is MS (and discussed it with the doctor) but needs the diagnosis to be confirmed via the MRI by a consultant. Because he’s so busy he said that it may be September before he can go back for an appointment.

This is a bombshell on a number of levels.

Firstly, the MS. I hope that he will stay strong and live life fully but I’m scared as I don’t know what affect it will have on him and on our relationship as there are different variations of it and people has such different experiences of having it. I need to do more reading up about it but it sounds utterly frightening to me. I will do my best to support him and will be there for him.

Secondly, I’m absolutely gutted that he didn’t tell me he was going through tests. He said he ‘didn’t want to worry me’. That’s kind of him but I feel shut out by it. I want a partner to be open and honest with me about things. I’m doing my best not to be annoyed with him as I understand there are different ways of coping with things but yes I just wish he could have felt he could have been more open.

Thirdly, he’s going to wait until September to find out the results and there’s no changing his mind about this.

He also doesn’t want his family knowing about all of this so now I must respect that and I am now being dragged into this secrecy when I feel like they should know. I can’t talk to anyone about this.

I’m feeling so many different emotions right now.

If anyone has any advice or can share their experiences (especially about relationships while having MS) I would be grateful.

2

Hi Bee,

I realise that you have found this out by accident and this is a difficult time for you both,but please don’t feel shut out its obviously his way of dealing with whats going on. I totally understand him not wanting to worry you.

I was diagnosed in Oct 2012 and had been with my partner 2 years. He has been very supportive but I feel huge amounts of guilt, like I’m selling him short, 2 years into a new relationship it should all be pink hearts and champayne but life just ain’t like that all the time.

Unfortnately right now you’re in limbo. I know that until you are armed with the diagnosis whatever that might be, its scary.

But believe me you will both cope. Many people led normal lives with ms. I have rrms and going through a relapse at the moment,just had my last dose of steriods today and I’m walking with a walking stick at the moment. It’s pretty hard to deal with but thats where the supportive partner comes in. I scare myself stupid when reading up on ms so i take it easy and let him do the reading and give me the edited version until I feel ready to find out myself.

I can only comment on my ms and my relationship. It hasn’t always been easy but we are both learning, the majority of the time everythings great and pretty normal.

When you get diagnosis (whatever that maybe) it will take time for it to sink in for both of you, maybe thats way he doesn’t want family etc knowing. There are still people I haven’t told, mainly cause don’t want people freaking out and also don’t want to be “Becky, you know the girl with ms”

Lastly cause I’m going on a bit I have added you to my buddies list feel free to send me a private message, I don’t come on here every day but will definately get back to you, also might be worth you posting on the eveyday living board, more people seem to be using them and you’ll probably get more response, everyone has been very welcoming and supportive to me on there

stay strong

BeckyX

3

If someone I had been with for years forgot to mention that sort of thing to me, I would be raging too.

It is beyond doubt that the poor bloke is terrified that he might have MS. It is very possible that he is also terrified that you will head for the hills when MS is mentioned, so has gone into classic denial mode - dealing with the problem by pretending it does not exist. It is even possible - and this is a nasty thought that says more about me than it does about your boyfriend! - that he thinks (consciously or otherwise) that if he forgets to mention the MS scare until you have moved in together that you will somehow find it harder to reverse out of the relationship.

Any road up, he is going to be in a bit of a mess at the moment, poor man, and it would be kind if you could cut him a bit of slack for being less than frank about his concerns. This is a situation when a person really needs someone on his side, and if you are able to reassure him on that score, it is likely to be a great comfort to him. Good luck with it all.

Alison

4

Hi Bee, I am at the very begining of my journey. At the moment I am waiting to see the neurologist as my doc has just referred me after 2 1/2 years of various symptoms. At the begining my husband knew I had been to the doc but didn’t really seem to believe there was anything wrong. This last bout of visits I didn’t tell him a thing until she decided to refer me. It was purely because I didn’t want to say anything until I had something concrete to present to him. I had been for ultrasounds, chest x-ray and bloods and he knew nothing about them. I did consider not saying anything until I had been to the neurologist. Sometimes something feels so overwhelming you don’t want to put it all onto the other person, especially if you aren’t sure how they are going to react. It isn’t that you don’t love or trust them enough. It is just that you need to get it straight in your own head before those closest get involved. Sometimes it easier to talk to friends rather than nearest and dearest as they are slightly more detatched from the situation.

Find out what you can about MS and just be there for him. If you want to talk just message me. I’ll add you to buddies.

Sharon xx

5

Hi Bee,

It’s been hinted at by Becky, but one possibility is still that he will NOT be diagnosed with MS in September - or at all!

Other things than MS can cause brain lesions, and it’s possible that even an attack that appears very “MS-like” may never happen again. Unless or until it does, then by definition, it isn’t “multiple”, and so, isn’t multiple sclerosis.

I’m not trying to give you false hope. Just to point out that MS is a very difficult and complex diagnosis, and not one that can be made by a non-specialist. There are things that look like it, but aren’t, or despite being similar in all respects, never evolve into the disease.

I’m not sure what the “leaving it 'til September” is all about. Do you think it’s because he is scared? I must confess to being someone who was never in a particular rush to get my diagnosis - which seems to be at odds with the majority here. I just figured what will be will be, and anyway, I was convinced I’d already it donkeys’ years (whatever “it” was), so the virtues of early treatment etc. were a bit lost on me.

In my case, there was an enforced delay, because my consultant wanted to leave it six months, then scan again. Only then would he have some insight into whether this had been a one-off incident, or was an ongoing (“multiple”) thing. So there can be sound clinical reasons for leaving it a few months. But that would be if a new scan was going to be done - NOT to diagnose from the original scan.

Not finding out because he is simply “too busy” seems an odd reason. Surely it would be better to know (and potentially gain access to treatment), than just not to be left wondering?

I’m sure his consultant would have cautioned against just leaving it, because he is “too busy”. I had this very conversation with my own consultant: “So what happens if I just leave it?” (i.e. don’t actively push for a diagnosis).

“Well, this may never happen again, OR it might happen again. If it happens again, it might be the same, or it could be worse. We would like to know what this is, so that IF it happens again, we will know what we are dealing with, and won’t have to start from scratch at that point.”

These are very valid points. Now obviously, the patient’s decision is final, but they were definitely trying to dissuade me from putting it off, because I was “too busy”, or just didn’t really want to know.

Tina

x

6

Hi, I am sorry you are in this situation.

To me, a loving partnership is all about trust, no secrets and unconditional love.

I wonder if your partner isnt 100% sure of your love for him…hence the not wanting to tell you about what`s going on.

But having said that, not everyone feels the same…of course they don`t.

He needs reassurance from you that you`ll be there in his time of need and fear.

As much as you stumbled on this without his knowledge, dont feel he has left you out.he simply is scared silly and hasnt got it straight in his own head yet.

Good luck with the moving in together and your future happiness and health.

Good love isnt always that easy to come by.

pollxx