Last reply 1 month ago
Newbie

Hi fellow MS-ers! I’m 25 and was diagnosied with RRMS on 2nd November 2018. Currently not on any medication as of yet. (Awaiting a comparison MRI but had to postpone due to chest infection – sod’s law). Just came across this site whilst browsing Instagram and just thought I would introduce myself. I’m not really ready to speak out about my illness to people “in real life” and so only the people closest to me actually know I have it. Do you find out hard it bring it up in conversation to others?

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grandma
1 month ago

Hi and welcome @katrinaf93, we’re all quite safe here, whole range of types of ms, ages, experiences, we all like to chat and help if we can. You’re very recently dxd, so don’t rush anything. A diagnosis if ms is no longer the sentence it used to be. Although I wouldn’t wish the diagnosis on anyone, even my worst enemy, if I may say so, you have picked a good time to be dxd. There are now a whole range of DMT’s available, your neuro and eventually your ms nurse ( best thing since sliced bread) will guide you through it, and as we always say with ms there’s no such thing as a silly question, so ask away if there’s anything you want to know. πŸ‘πŸ˜œπŸ˜


katrinaf93
1 month ago

@grandma
Wow, thank you so much for your kind words. When I first heard the words “MS”, I literally thought I was completely on my own and by myself so to come across a network like this is truly such a support to me. Even to find out the various experiences and types people can have is blowing my mind. I’ve never known anyone to have the disease and I am totally uneducated about the whole thing so this is a BIG learning curve for me.
Thank you again <3 so appreciated.


stumbler
1 month ago

Hi @katrinaf93 and welcome.

MS is still a taboo condition, which just isn’t talked about that much. But, there’s a possibility that there’s another MS er not living that far from you.

We should all wear T-shirts really – “I’ve got MS!”


katrinaf93
1 month ago

@stumbler – I sometimes find myself saying “aw I have this autoimmune thing” and people don’t really question it or process it as there’s actually something wrong so that really passes the buck. You’re totally right though, somebody from my class at school spoke out about his MS on social media recently saying he had it for 2 years. I couldn’t believe it.
It’s such a shame it’s so taboo. Suppose that’s why there’s a need for this kinda platform to help everyone speak out πŸ™‚


hope33
1 month ago

Hi and welcomeΒ @katrinaf93. I have had MS for about 4 years now. Try not to Google too much on MS but another friendly and helpful forum is on the MS Society site.


myself40
1 month ago

Hi i am Margaret and had what doctors thought was a stroke 4 years ago after mri and lumber puncture and 3 years later iwas diagnosed with MS it was a relief to finally know what was happening to me but a fear also as i had never really heard of it before wich is sad as this affects so many people so this is a new journey for me also i find being open with people makes me better understood and I have 4 children so my only concern is that they are missing out on the fun stuff jungle gym is out of the question for me now


katrinaf93
1 month ago

@hope33
Googling can be so frightening! It’s so important not to compare your journey to someone elses, isn’t it? Effects everyone so differently but thanks for this! Will definitely check it out. πŸ™‚


lukezni_1
1 month ago

Its not something i would bring up in a conversation, although i have no problem trying to talk about my ms if someone was to ask about my life and health etc. I really like it when i get the chance to talk about my condition (id rather not be in this position at all) but letting it all out really helps you and the people around you! I say trying because i find it extremely difficult to try and explain things to people. My main symptoms are that of the cognitive area and constant double vision which ive had for 11 months now!! I was diagnosed in september 2018 and i’m about to start treatment for my RRMS in 4 weeks.


katrinaf93
1 month ago

@myself40
Hi Margaret, thanks for introducing yourself. It’s lovely to meet you πŸ™‚
I’m glad they got to the bottom of it at last. I’m not on medication yet but I know there’s a wide range available and seem to be successful so if you haven’t already, I hope they find something that works for you. Don’t rule out the jungle gym just yet.

Keep in touch, we’ll help each other through this! <3


melmel1
1 month ago

@katrinaf93 hope your bearing up okay and keeping chin up xx


vixen
1 month ago

Hello @katrinaf93, I am 2 yrs dx. I told only those closest but in the last month have been telling all and sundry. Now I feel nicely unburdened but I’m glad I did it in my own time. My advice would be to allow yourself plenty of time to absorb this newness. Don’t rush any decisions about anything, and deffo stay away from Dr Google. You are young, have a great outlook and a wonderful life ahead of you. And you have lots of support here, so nice to meet you x


peterfrancis
1 month ago

@katrina93

Hi and welcome to the site.

It’s your illness and not theirs, that’s all you need to protect you.


kimmastro
1 month ago

@katrinaf93
I’m here to tell you that an MS diagnosis is definitely not the scary thing it used to be. There are so many meds out there that weren’t there even 10 years ago.
I was diagnosed in 1978, a year before I got married! I have been on Copaxone 40 for four years (went without meds for all those years because I just didn’t know what was available) . It works for me, and your doc can help you find what works for you.
Good luck and keep in touch with everyone here.


studentandms
1 month ago

Hi @Katrina93 welcome to shift.ms . I am 23 and was diagnosed with RRMS a year ago. Like you, I also kept my diagnosis to family and a few key people. After the initial 6 months I then let more people know and now my whole theological college know and since then have been a real source of support. I found it hard to explain it at first and wanted to protect myself as I adjusted to the diagnosis. I found ways of explaining that made sense (happy to PM you about these). Remember that people are often keen to help once they know how to (listening ear, the odd meal here or there or company when you’re feeling fatigued). The most important thing is to look after yourself and allow you to take time to process the diagnosis. I spent a lot of time trying to manage how friends and family reacted to my own diagnosis that I often forgot to first look after myself.

Let me know if you’d fancy talking further


katrinaf93
1 month ago

@studentandms
Hi, so nice to meet you and thanks for sharing your story with me! I’m glad you felt you could open up to people. I hope in time that’ll come for me too. I totally agree with you though, I often assume people will think badly of me for having the illness (this is so stupid, I know) but I know most would probably be supportive and wish to help.

Would definitely like to keep in touch with you and thanks again for reaching out πŸ™‚ xx


grandma
1 month ago

@katrinaf93 noticed from you bio that you’re in Belfast, there are lots of people on Shift also from Belfast, and as you mentioned you found out that an old classmate had had the beast for a couple of years. Might be worth organising a get together in Belfast, then you would find out how truly you are not alone!😜

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