sarahlb 14/06/18
Last reply 2 days ago
Newly diagnosed

Hi I got diagnosed with rrms two weeks ago. I’m 38 and surgeling a bit with the new. I have thought for a very long time that I have this but only recently my gp stared to listen to me as the pain was getting worse. I have an app next mth to see the neurologist about med they said I might get started on tecfidra and pain med. is it normal to feel so lost anxious want to cry all the time after being told this. Thanks Sarah.

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stumbler
4 days ago

Hi @sarahlb and welcome.

A diagnosis of MS hits you and you have to navigate your way through a grieving process, as you have lost your usual healthy self.

So, take your time and go easy on yourself. It take time to process this information and learn what it means to you. Life will still go on, ambitions can still be realised. You just might have to adjust how you achieve those ambitions.

Make a list of questions and concerns that you have, so you can take the list to your Neuro appointment to ensure you don’t forget anything.

Post any questions you have and we’ll provide some responses.


sarahlb
4 days ago

Thank you. I have a list done already think it’s just going to take time to get used to.


doubleo7hud
4 days ago

I was kinda expecting it too it was the best one off the list of things they were testing me for 😂 so I’m happy as a pig in sh1te. was looking down a barrel at one point before diagnosed. Get to see my baby grow up, unless I get hit by a fecking bus while I’m trying to hobble across a road 😂. Theres the tortoise n rabbit like thing, I’m now the fecking snail with legs like a couple of floppy dildos.

Not saying don’t feel sad, that’s normal almost everyone does at first I did not I guess I knew where my strengh was already (missis and kids) you just need to find yours and you’ll be fine (mans fine tho not woman’s fine, when a woman says fine it’s completely the opposite 😂)


doubleo7hud
4 days ago

Babys (3) not baby


rotherhamdave
4 days ago

When I was diagnosed, it hit me like a train. I didn’t know what to do or turn to talk to, it was hard. Since this journey I’m surprised of how much help is out there. I didn’t think there was but now I’m not worried as there are people/friends there to support you.
Now I get on with life as I’ve adapted to all the changes.
Be strong, there’s no rush with anything and you’ll normal x


vixen
4 days ago

Hello @sarahlb, yep, everyone will understand what you’re going through and believe me, it might not seem it but you will get through and pop out the other side. Take all the time you need to digest the news, it’s a shocker. But yes, there could be worse for sure. Lots is happening in the research field. There are lots of posts on here about Tecfidera, which I take too, so if that’s the route you go, search the box above to find tips and advice.

The feeling is loss and anxiety are totally normal. Over time, they will have served to toughen you up and change your view on our condition to a hopefully more positive one. Stay strong, eat healthy, sleep lots and ask questions anytime x


wobbler
4 days ago

Hiya @sarahlb …. just remember that MS does not make your life worse… just different. It’s’a shocker to find out you have MS but try to keep positive. MS does not define you, it is just a small part of who you are.


sarahlb
4 days ago

Thanks everyone. It’s good to talk to people who are or have been in the same boat. Also nice to know their is light at the end of the tunnel. 😊


buford
4 days ago

Hello, I was diagnosed just a little over a week ago so I know exactly how you feel. I’m still try to come to terms with it myself. But with the help of all the good people on this site, you will feel a lot of support and not so alone. We can still live a fulfilling life.
Take care


grandma
4 days ago

Hi Sarah, sorry about the bad news, but perhaps not so much of a shock as you had an inkling! Even there is no good time to be diagnosed with ms, now is a good time cos there is so many dmd’s available that you have a choice. I am an old codger, diagnosed 24 years ago there was no choice, I was on Avonex for 23 years but was changed to Tecfidera at the start of this year, 6 months on all seems ok.

Sit back, take your time, don’t stress (no good for the ms) assimilate all the info available (apart from Dr Google👿) and don’t forget your list when you go to see the neuro. You have found us early,so you can rant,cry,celebrate,moan, whatever, we don’t judge cos we’ve done it all ourselves, don’t be unhappy, we are always here😍


sarah_irwin
3 days ago

Hi Sarah
Its totally natural to feel anxious especially as the diagnosis is so recent. At least you now have an answer to the symptoms you’ve been having and you wont feel like you are imagining them. I hope that when you meet with the neurologist they put you at ease and answer all your questions, maybe then you can start to focus more and start to look to the future in a positive way.
Take care
Sarah


sarahlb
3 days ago

Thank you so much for all the kind words. It is helping reading all these messages. Thanks again. 😊


acacia
3 days ago

Hi Sarah, sorry you’re having such a tough time at the moment. I have also been recently diagnosed with RRMS (April 2018), though pretty much saw it coming ever since I googled my symptoms when they first flared up just before Xmas 2016 (not a Xmas present I would recommend haha).

I see you live in Edinburgh – I’m in Glasgow, so not far at all. If you ever fancy meeting up for a chat and a drink or just a bit of support then feel free to message me. 🙂


fingersandtoes
3 days ago

Hi Sarah, I’m also Sarah. 37 and living in London. I was diagnosed at the end of last year after a long time in limbo. My wobbly moment came after my first MRI result four years ago. The doctor had terrible bedside manner. He asked me questions about symptoms, I said no, no, that doesn’t happen..he said “are you sure?” As if I was lying. Fast forward three years, no relapses, then I had three last year from February to October before finally being diagnosed in November.

Good things about a diagnosis: you can DO something about your condition now by choosing and going on a DMT. Do your research (think my consultant said to Google MS Choices – I’ll come back and edit that if I’m wrong).
Also all this help is now available. If you are struggling with your diagnosis you can get CBT through your hospital. Ask about it at your next appointment, it was the nurse consultant who mentioned that to me though not the neurologist. Though my neuro said “you’re in the system now, one of the gang” and she was right. You can actually access help now. I was considered far too positive for the CBT (though I’ve had mood swings I think are cognitive effects – I ought to mention those next time) but I have been referred to a group. Still on the waiting list for that.

Another tip: take someone with you when you see the neuro. I took my best friend and she wrote loads of notes – very useful! They’ll send you a letter too summarising the appointment but it won’t be for ages.

Finally: be kind to yourself. Yes, it’s a shitty diagnosis so you need to give yourself time to process it. Prioritise self-care. Try to do something that makes you feel good every day.


sarahlb
2 days ago

Thanks acacia no not a great xmas for u last yr hope u are keeping well now. Iv had about 4/5 relapses in 1 yr. yes not to far thanks for the offer. I might take u up on that when Iv got my head sorted out. 😊


sarahlb
2 days ago

Hi fingersandtoes it is terrible when u know what’s going on but the Drs ether not listening to u or just treating every time u got them as a single thing. I was the one who had to say to my gp about it being ms for her to say yes u have some symptoms that could be related. I will ask about cbt on my next app thanks. My husband goes with me as my first app when they told me I have it is a total blur. He was asking questions and I can’t even remember. Iv got 4 kids and a 1yr old grandson so doing things with them is my happiness every day 😊

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