Hi All Just got my definitive diagnosis of RRMS. All my family are whooping and cheering because it’s the lesser of the 3 types (their words not mine) Why can’t I see this as a positive?? Why can’t I follow their enthusiasm! I am still rather melancholy. Julie xx
my diagnosis came with a cheery “well it’s not cancer!”
kinda knocked my socks off… because the notion that it might have been was never raised.
ultimately, your family’s desire to put a positive spin on your situation is not unusual. in fact, i am convinced that a relentlessly positive attitude is intrinsic with living well with MS.
however, no one, not even fellow sufferers of this bullshit disease can truly, fully appreciate the burdens and hurdles you have to endure. and so to this end, there is no justification or even need for you to ‘buy in’ to anyone else’s perception or disposition.
confirmation of any form of MS is a firm kick to crotch and you are entitled to take your sweet arsed time when getting your head around it. there is no rush. there is not a schedule. just you, coming to terms with this new reality and whatever it might have in store, or has already bestowed upon you.
good luck.
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Relief at diagnosis is quite common as some of us are just confused at how our bodies are behaving (me) or have spent a lot of time in ‘limbo’, i.e. knowing something was wrong but being unable to get a diagnosis.
I can easily admit now that I cried every day for about 2 weeks after diagnosis and then every few days for a few more weeks and even now 3.5 yrs after diagnosis, I still have a meltdown every few months but I’ve got PPMS so there’s no breaks from it. You do still have to mourn your old life in some ways as you know you’ll never be completely carefree again and you may need regular medication, if not a disease modifying drug then quite often meds to help with side effects.
I don’t think there’s a right way to feel, it’s a bitter pill to swallow that MS is gonna be with you, probably forever. Don’t feel bad for feeling low hun, MS is certainly a game changer and only people with this type of dignosis can really understand how you feel.
So welcome to the club, this forum was a life saver for me when I was diagnosed - I have no idea how people coped before the internet! Quite a lot of us seem to blog, I do cos it gives my husband’s ears a break There’s also a few good groups on facebook. There is no one place to find out all the things you might need to do but that’s where this forum & facebook are so useful. I found out from my neuro that I needed to inform DVLA but I had to ask him about physio, an MS nurse etc. There’s also benefits you might be entitled to like PIP (personal independence payment) depending on how you’re effected by MS and support at work etc.
Try to keep your chin up, you are definitely not alone
Sonia x
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I was relieved when I got the diagnosis of RRMS because now I could give a name to what was wrong with me. When I had my first attack (numbness down my right side from head to foot) I went to see my GP. After checking me over he said, “The good news is that it’s not a stroke. The bad news is that I don’t know what the problem is.” It took more than three years to get a firm diagnosis. I wouldn’t necessarily agree with the idea of “the lesser of the three types”. RRMS is different for everyone. Relapses can be trivial but they can also put someone in a wheelchair, even if only temporarily. (Been there, done that, got the continuing mobility issues.)
Don’t think that you have to feel good about the diagnosis just because your family is putting a positive spin on things. Take your time to get used to the name that’s been given to your condition - it’s yours for the rest of your life. Accept that there may be limitations on what you can do, but you’ll find these for yourself. Don’t let others impose them. Once you have come to terms with the diagnosis, get on with living your life and enjoying it as much as you can.
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How very aggravating. If anyone had whooped and cheered when I got my RRMS dx, I think I would have bitten them.
There are as many ways for friends and family to ‘not get it’ as there are friends and family. I think that is one of the things that can make having MS a lonely business. It is the people who love us and whom we love who make life worthwhile, but that doesn’t mean they will be much good at helping a person to deal with the news you have just had. Apart from anything else, they have their own hopes, fears and distress to manage and their own paths to follow; you have a different road to take and a different perspective. That can feel isolating, but try not to let it get you down too much. The people who really matter will be with you for the long haul and through thick and thin, however clumsy and insensitive to your needs they might appear to be right now. Dealing with the reactions of loved ones is one of the unexpected difficulties of an MS dx, as many of us know - you are not alone.
Good luck, and I am sorry about your dx.
Alison
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Of course you’re not going to be doing cartwheels and whooping with joy!
But I kinda do get your family’s so called ‘happiness’ at finding out you haven’t got a terminal diagnosis!
I hope they’ll be there for you when you really need their support and help.
Not everyone with MS has a really tough time of it, but others do.
You need to pace your activities and not to be afraid of hurting someone’s feelings, if you turn down an invite, or need understanding should you forget a birthday.
Look after yourself and accept help however it comes.
Luv Polly x
Thank you for all your kind comments. I decided to be positive today but sadly this did not last. I do feel throughly P**sed off with it. I feel like I have been told yet I am left to get on with it! I won’t see anyone for weeks. If this is a relapse then it is a long relapse!. Julie xz
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Hi Julie
I think you are completely justified in feeling utterly pi**ed off with the diagnosis. I don’t think it’s on that other people, who don’t have to experience the crappiness that a diagnosis of MS brings, feels like celebrating just because, in their view, you’ve got the ‘good kind’!!
There is a small sense of positivity in that at least you qualify for DMDs which someone diagnosed with progressive MS doesn’t have the option of. But no kind of MS, regardless of type, is for sissies. It’s all crap.
And even with DMDs, life isn’t always plain sailing. Many have side effects. The most effective come with the biggest risk.
Having said that, at least we are now at a point in time when there are many DMD options for people with RRMS. So you could be lucky and find a good one that doesn’t give you too many side effects, and wards off relapses for years to come.
Sadly, some relapses do take a good while to remit. And even then it doesn’t always mean you get complete remission. And it’s a condition for which there’s no great speed involved in getting sorted with drug therapies, MS nurse, physio, etc. Hopefully you won’t have too much longer to wait for remission and drugs.
Sue
It won’t kill you! They were rightM
Yes, they are right. RRMS might remit and not relapse again. It might only relapse mildly or very rarely…it is indeed the one to have!
I rather not be whooping about it thanks!
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