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Newly diagnosed and in need of some positivity!

I’m a 27 year old female and I was diagnosed with RRMS just under a week ago. In a way I wasn’t shocked. I’d suspected it for a while but it still felt like the air had been taken out of me when the consultant told me. What I wasn’t prepared for a was how negative a lot of the information is online! It talks about how debilitating MS is and shortened life expectancy etc. Right now I’m in need of some positive stories of how people have gone on to live relatively normal lives and even gone on to have children. A week before my diagnosis myself and my partner were discussing children and now I feel like it’s completely changed. I understand people may think I’m burying my head in the Sand and not wanting to face reality but I just really need to know that MS isn’t going to completely take over my life and I can still live a happy, relatively normal life. Thanks!

hi there life goes on you know. you have to find ways of dealing with the symptoms. for me the worst symptom has been fatigue, followed by bladder issues. so for the fatigue you need to plan when it is going to be severe. for example if you have a busy day tomorrow you can expect to be severely fatigued on tuesday so plan a restful day. bladder - know each and very loo location in town. carry spare tena lady pads. get on a good medication from the bladder and bowel nurse (i take betmiga) whatever symptoms are getting you down, ask on this site because the replies will be tried and tested. it is very early days for you just now. give it time to sink in. allow yourself the full gamut of emotions. shout and scream your rage at the hand you’ve been dealt but don’t let it last too long. be good to yourself, have treats on a regular basis. such as meet friends for coffee. go to the pub for a pint. buy tickets to see a band (my favourite this). MS is a wretched so and so but you don’t have to let it take over. carve yourself space for the things you love. as for having children, you need to take this into consideration when the topic of Disease Modifying Drugs is raised. i think (but i’m not sure) that copaxone is safe. it depends how stubborn you are. my first reaction was to dye my hair bright pink. my dad was delighted because he said my stubbornness was exactly what i needed. this is YOUR life so you can choose not to let the unwelcome invader take over. best wishes to you and your partner carole x

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Hello

There are a million different emotions that you’re likely to experience as a result of your new diagnosis. You might feel that there’s too much negativity, but often people want a bit of time to wallow in the downside before having to get a handle on MS and just start getting on with life.

I’ve had MS for 22 years. For the first 10 years I was fine, still working (hard), partying (also quite hard!), in general didn’t look like, or (mostly) feel like, I had MS. Then the relapses became a bit more frequent and disability gradually crept into my life. It was gradual though. It wasn’t until 7 years ago that I had a real humdinger of a relapse that took away my walking ability.

Mind you, for most of my 22 years, I’ve not have the benefit of disease modifying drugs. Initially because there weren’t any, then because the one I was on stopped working, later because I suffered crap side effects from the others. I’m now labelled Progressive Relapsing.

For you, the journey will be better than mine. You now have scads more DMDs available to you than I did. You don’t need to think about children right now, you could be on a good drug that wards off relapses really well, then perhaps swap to Copaxone when you do decide you want to get pregnant.

Meanwhile, your life will continue just as it did before, maybe with a few tweaks and alterations, but pretty much as you were.

There are positive stories out there. If you join the MSSociety, you’ll get their magazine, MS Matters several times a year, there are always positive personal accounts of life with MS. On these forum pages there are also positive stories as well as worries and fears.

Keep well, stay as positive as you can, but if you feel the need to shout and swear or yell ‘it’s not fair!’ then allow yourself that freedom before returning to get on with life.

Sue

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Hi there, I was diagnosed with RRMS in June this year. I’m 48 with 2 kids under 7. I think I’ve probably had it for years, but I’ve had very few symptoms. I already genuinely believe it is what it is & loads of other conditions are much worse and often with a more rapid decline. I’m not in denial, although I have enjoyed more wine than is healthy. The other two posters are incredibly supportive & have masses more experience than me, but you will be ok. My take is there will good & bad days & lots of unpredictability. No-one would know I had MS if they met me, so I have dealt with a lot of shock & people questioning the diagnosis. You are dealing with it. You’ve posted on here really quickly & you’ll find yourself literally tripping over people (pardon the black humour) who want to help you in your journey.

Hi, Similar situation to you! I’m 26 and although I haven’t been officially diagnosed with MS yet, I’ve recently had a second relapse following a CIS (clinically isolated syndrome) diagnosis 5 years ago. I’ve just had a second MRI, I’ve seen the MS nurse and just waiting to see the consultant when I suspect I will told I have MS. I’ve just got married and I’m sharing all the same worries as you - I really want to have a baby fairly soon but I’m worried about the future. I’m trying to stay as positive as I can though, and I think we have to make the most of the time where we feel well! I actually think a lot of the posts on this forum are very positive and it helps a lot knowing people can live with this disease and manage the symptoms! Are you going to start on a disease modifying drug? I’ll be interested in your experiences as we seem to be at similar stages in life!

I think we’re definitely at the same stage! I didn’t mean posts on here are negative, I mean the Internet in general, it all seems very doom and gloom and “life stops here” Kind of thing. I’m not sure what I’ll do just yet, I’ve got an appointment next Friday with a consultant who I’m guessing will go through my options. The other consultant who diagnosed me isn’t an ms specialist which is why I’ve been referred. She told me to mention about having children and they’ll work around it? This is the exact reason I think now is the right time, while I’m still well and active! Please let me know how you get on at your diagnosis and if you need anyone to talk to :relaxed:

Hi ET

Firstly, you are right - the internet is a very scary place when you are newly diagnosed and looking for information. There is an awful lot of information out there - much of it reflecting extreme cases. It is very important to filter it very carefully before drawing any conclusions.

MS affects everybody differently and it doesn’t sound like your experience so far is very bad though I do understand that even a relatively mild relapse is terrifying. Its important to remember that most people go for very long periods of time before they see lasting impacts on their lives - albeit that they may have relapses from time to time in the interim. This is very important to bear in mind when you are newly diagnosed because there is a vast amount of research being conducted. This is already delivering lots of new treatments and lots of new information on the disease and how to treat it. Hopefully, these new treatments will help you live a perfectly normal and relatively healthy life.

My son was diagnosed about 7 years ago. In that relatively short timeframe, several new treatments have come on stream that vastly improve the outlook for sufferers. More importantly, in my sons case, the research has discovered other conditions that mimic MS and he has now been re-classified as having MOG-Antibody Syndrome. Based on a lengthy relapse free period, the doctors have now told us that they do not expect to see any further relapses, plus he no longer has to take any DMDs. This was knowledge that simply was not known or available at the time of his diagnosis.

Who knows what advances will be made in the coming years? There are already treatments that delay and modify the disease. These are likely to improve and you should try to keep a positive outlook and get on with life!

Best of luck.

Conor

Hi Connor, Thank you for your reply! What a lovely story about your son! I love hearing positive things like this and it’s nice to know that people have gone on to live normal lives even with this disease. It gives me hope! Thanks again :relaxed:

ET,

You can aspire to an extraordinary life as well as “relatively normal” I do understand where you are coming from it was never on my plan to have MS. You will amaze yourself , your family and friends by how you learn to adapt and cope with the horrid bits of this condition. Whilst there can be massive impacts on your life you will develop methods and strategies that will enable you to make the most of your life. Don’t be constrained by the potential “nasties” just deal with any challenges if or when they arise. I had written my life off on several occasions and even with big changes I am still in the game planning exciting family adventures.

All the very best to you and yours.

Mick

You shouldnt let having MS dictate weather you want a baby or not. MS is a very grey area and in the words of forrest Gump ‘is like a box of chocolates, you never know what you’re gonna get’. My mrs was diagnosed in Sept last year and had treatment for it in Jan this year. So far she is well and living normal life - it hasnt changed our minds about having a baby or anything.

[quote=“ET1991”] …I just really need to know that MS isn’t going to completely take over my life and I can still live a happy, relatively normal life. Thanks! [/quote]

It depends how you look at it. I’m not going to lie: unless you are very lucky, there probably will be times when you feel that MS is looming large in your life and making a lot of things more difficult then they might otherwise have been. But it is also completely true to say that you can live a good life and a happy life and one that is relatively normal. As another regular member on here memorably said, you might have to redefine normal just a little bit, but that’s what life makes you do anyway, MS or not.

For what it’s worth, I have had aggressive RRMS for over 20 years (latterly well controlled by Tysabri) and have had some dark and difficult times, and, like everyone else with MS, never know what’s around the corner. But at the moment I’m well and happy, have just come home from a lovely and invigorating swim, it’s a gorgeous day and I’m heading off for the beer festival shortly. Life’s not so bad. I’ll raise a glass to you when I get there, and wish you well.

Take heart. Most things work out in the end, even if they don’t always go the way you intended.

Alison

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