Boyfriend and MS

Bee_

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 He'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.

ash23

I'm 30 and was diagnosed with ms 6 months ago. My boyfriend dumped me a few weeks later. He claimed the ms wasn't the issue but it was really.

With regard to your ex it's not something he can control or predict so I can see why he may have wanted to keep it to himself. It's a lot to take in and the diagnostic process takes time. Everyone deals with it in their own way. I doubt he was trying ti shut you out, he was probably just trying to wrap his own head around it and didn't want to worry anyone until he had a firm diagnosis.

Only you can decide if the ms is something you can live with in the future. Like you said, it's very variable. He might be fine for years. He might not.

I was quite angry at my ex for ending it when I needed him. But staying with me out if pity or because he didn't want to be a bad guy, that would have been worse.
My life has been totally turned in its head and I'm still trying to.process it all. So the diagnosis is just the start. I hope I don't sound too negative, it's just that today was a bad day. Those come and go.

Anyway, best of luck with it.try to avoid google. Stick to the ms society websites for info. As for waiting til September, personally I don't think I could wait. But he might want more time to process it. Realistically, a couple of months won't make a difference. My gp more or less told me I had ms but I couldn't get a Neuro appointment for a month. I wouldnt let him put it off indefinitely but a few months isn't going to change much. Let him deal with it in his own time.

Bee_

Hi Ash23, thank you for your reply. It means a lot as I feel really isolated and cannot talk to my family/ friends about this. I'm sorry to hear about your diagnosis and your ex. Not everyone will be scared off by MS. Despite being in tears today, no matter what the outcome is I plan to stick by my boyfriend and do everything I can to brighten up tough days and be there for him. Despite all the scary things I've been reading via Google (which I'm now going to avoid!)

I'm finding the wait until September very tough and today is just day one for me. It's my boyfriend's choice of course but I just wish he would find time for an earlier appointment to figure out which type of MS he has etc (I want to understand better what our future may be like). I will do my best to respect his decision and try not to discuss it unless he brings it up - as he must be still processing it alright. I'm finding this news tough to deal with because I am unable to talk about it with him (as I was never meant to find out at this stage and he is very blase about it all) / anyone in my own life.

I hope tomorrow is a better day for you x

byhookorbycrook

It's a very hard diagnosis to accept and I can understand why you are upset. Men tend to stick heads in the sand on health issues. I was diagnosed in 2001 and am still working and leading a reasonable quality of life. It's a very unpredictable disease, but I strongly urge you to try to get him to think about disease modifying drugs (DMD), they wont cure MS but will slow it down, hopefully.PM me if I can help.

Paddy James

At 36 have MS two years

Best of luck to you both and I think your boyfriend needs the space to get his head around it so I would give him the space until MRI even though it's hard for you

I would also say an MRI is not the only test I assume they doing a lumbar puncture?

If I can be of any help please PM

ash23

Paddy James wrote: »

I would also say an MRI is not the only test I assume they doing a lumbar puncture?

I was diagnosed without a lumbar puncture. There was sufficient evidence in medical history (relapses) and on my MRI (lesions on spine and brain) to support the diagnosis without a lumbar puncture.

So it's not always essential. It was left up to me as to whether I was willing to accept the diagnosis or if I wanted a lumbar puncture to cement it. I figured if I could avoid it, I would.

byhookorbycrook

Didn't have a lumbar puncture either..

BohToffee

Bee, like you say all you can do is be there for him... My now wife was diagnosed 7 years ago, we have had our ups and lots of downs they the years but are now a month married and life couldn't be better.. My oh's mobility isn't great but every case is different... There are a few msers I follow on twitter who are running marathons etc.. One thing I will say is be as fit and physically strong as he can be...
Like others have said if you wish to talk thru anything pm. Where is your bf getting his appoinment??

BohToffee

Bee, like you say all you can do is be there for him... My now wife was diagnosed 7 years ago, we have had our ups and lots of downs thru the years but are now a month married and life couldn't be better.. My oh's mobility isn't great but every case is different... There are a few msers I follow on twitter who are running marathons etc.. One thing I will say is be as fit and physically strong as he can be...

Like others have said if you wish to talk thru anything pm. Where is your bf getting his appoinment??