Forum

Diagnosed this morning..

Got my diagnosis this morning after a fairly short period of scans etc.

I feel ok at the moment, not upset, just kind of numb like it isn’t happening to me - did anyone else feel like this?

At the moment I am more worried for my family and partner!

Next step is appointment with MS nurse to discuss treatment options then back to see the consultant. I get married in a month so the consultant is happy for me to delay treatment until after the wedding which is good.

If anyone wants to know the steps to my diagnosis, see below. I think mine was pretty straightforward, but I was so impatient and frustrated as I never knew what was happening next.

Referred for spinal scan by consultant.

Spinal MRI showed two lesions.

Referred to neurologist who carried out neuro exam of reflexes, eyes etc

Sent for MRI of cerival spine and brain

Scan showed lesions in the brain

Referred to specialist who carried out another neuro exam and compared the scans - and diagnosed from this.

Hi C84 and welcome.

It’s really really hard getting dx with MS. No wonder you feel it’s happening to someone else. It’s a very normal feeling. You will go through a whole rollercoaster of emotions, from disbelief, to anger, to fear, sometimes even relief. At least you now have a name for what’s been causing the problems… and that can be a comfort… although you have been dx relatively quickly so you might not feel this.

Just roll with the emotions. They are all normal (oh even guilt… as if you did something to deserve it. You didn’t!).

It’s very important to try and talk to someone about these emotions as it helps put them in perspective. Try and talk to your partner or friend or family member. If you would prefer to talk to a stranger phone the helpline… number at bottom of this page.

But particularly try and talk to your partner as you and he are setting out on a life together and you should feel like you can express these emotions from the start. He will be scared too… so you need to support each other. MS is going to be a part of your journey together… but it will only be a part. You’ll have all the joys and sorrows of any marriage that have nothing to do with MS.

As you might know, MS is different for every single one of us… but for the vast majority of MSers life is fairly normal… work, marriage, sex, babies, holidays… etc etc.

When problems come along you will cope with them and after a while it won’t seem so strange and scary having MS. And remember, there is loads of research going on worldwide. New treatments are coming along all the while and for the first time in history there’s even talk of a cure.

So… for now, lots of rest and TLC… and talk! I promise you it will get easier… just takes a bit of time.

Best of luck with the wedding! I’m sure you’ll have a fabulous day. Big congrat’s to you.

Take care,

Pat x

Hi C84. I got my diagnosis last week and am also feeling quite detached or numb. I am struggling with other people’s reactions to it - on one hand I know that family and friends are worried and have lot of questions but on the other I have an overwhelming urge to hide myself away and pretend it’s not happening. Good luck with the wedding!

Thanks so much Pat for the kind comments - it is really refreshing to hear that it isn’t all doom and gloom and something that is manageable and can be adapted to.

The guilt thing, omg the guilt!! I feel so guilty for getting married to my partner!! It is so silly I know, but it seems to deeply unfair in my eyes for him - ofcourse he doesn’t see it this way at all! I am guessing it is all part of the natural process of getting used to it.

Sunflower, the word detached is a very good descriptive for it - really does feel like that for me too. I haven’t actually told anyone face-to-face yet, which worries me when I do as I know there will be some weird reactions. Even texting some people today who knew i was going through tests was weird as they didn’t really know what to say, but everyone just wants to help at the end of the day.

I think it will get easy for us once the shock wears off (for us and for our families and friends) once they know more, they will stop worrying.

I hope it gets easier for you

XXX

Hi all! I’m new to this forum stuff (and the UK!). My husband and I just moved here from the US, and right before we left I had an episode of optic neuritis along with other MS associated symptoms. I was in and out of the hospital for a month, MRI showed two small lesions, but the doctors didn’t think it was sufficient to diagnose MS. Iv’e been feeling great for about two months now (at which point I convinved myself I did not and never would have MS). But of course, lately I have been feeling odd. My whole body feels restless, my eyes are hurting the way they did when I had optic neuritis, and my vision does this weird thing that I can’t explain, but is definately not normal. So now that I have been forced out my denial, I had a question for you guys.

How is NHS with treating/diagnosing MS. In the US you always here that socialize medicine is horrible…blah blah blah. But given that I have not had any expeirence with it (nor have all the people who think they know what they are talking about), I figured I would ask people who are actually dealing with it. Iv’e heard its excellent with a lot of immune disorders, but I havn’t heard from anyone with MS or who is in the “limbo” stage.

I would really appriciate some feedback!

Hello, Pat’s response is brilliant as usual :slight_smile: Sorry that you have been diagnosed. Give yourself time, I was diagnosed in Feb and I still get varying emotions when I least expect it. Have a wonderful wedding day, I got married last year and it was great :slight_smile: I wasn’t diagnosed until this year but we knew something was very wrong. It was our secret and we had a little plan that if I lost my balance during the ceremony he was to take my hands and make it look romantic somehow!! Sam x

Sorry to hear about your diagnosis, but even more sorry to hear that you’ve been hit by the guilt monster :frowning:

Of course, it’s perfectly natural, but please please please try to let it go: you did absolutely nothing wrong, you didn’t ask for this and it’s not even remotely your fault. If it were your very soon-to-be-husband (congrats :-)) who had MS, would you be angry with him??? You know all this of course, but it’s hard to override feelings with logic :frowning: For me, talking is the best solution: ideally with your fiance (and I mean “with” - let him share too), but with anyone who will listen, understand and not judge so you can let it all out. If you’re worried that honesty will just freak out friends or family, then please try the MSS helpline (as Pat suggested) or ask your GP to refer you to a counsellor. I saw a counsellor when I was newly diagnosed and it helped me masses.

In the meantime, be kind to yourself, take it one day at a time, and have a wonderful wedding!

Karen x