So after 6/7 weeks of anxiously waiting, googling and thinking of every worst case scenario I was diagnosed with RRMS today.
It came as absolutely no shock to me and if anything I’m so relieved!
The neurologist showed me my brain and spinal cord scan, brain showed 4 lesions, and a small faded one on spinal cord (what does this mean please?). I also had an inconclusive spine mri (is this something to worry about?)
I’m under no illusion as to what MS is and the course it may take, however I feel quite positive and optimistic at the moment… not sure if I’m just being naive. I have an appt 24th Feb to speak with the MS specialist about medication etc. What is everyone’s experience with this? Is there a medication they usually go to first?
Hi Katielou, lots of us are waiting for diagnosis on this board so most of us probably have more questions than answers! Hopefully a more experienced person will be along soon, I just wanted to say its really nice to read such positivity, hope you’re keeping well x
being diagnsoed means you can now be offered a disease modifying drug which hopefully suit you and slow down progression. what did the neuro say would be the next step? If your in the UK you should be offered an MS nurse.
Having a lable should really not change much. Just makes you feel relief as people finally believe you.
I can only say be positive, dont read all the negative things about how it impacts peoples lives and they are all ending up in wheelchairs etc, i know a ton of people who live fairly normal lives and the life expectancy is not much shorter then someone without.
You dont have to end up in wheelchair, in fact many never do.
MS is different for everyone. My friend worked with hers until she was 71 and travelled to europe with her job and had it since she was 30. Sadly we lost her to bone cancer.
the thing is I think positive attitude helps, and getting as fit as you can, eating healthy is a must, and listen to your body. If it tells you hey I need to rest then rest.
Many still work, and go on holidays and drive, and get married and have children.
Hi Crazy Chick, thanks for your reply it’s actually made me feel so much better. Yeah they said the next step is to meet my MS nurse which is when I assume we will discuss treatments? The only thing I worry about is the fact I’m 24 - I worry that I’ve been diagnosed early in life and therefore I will get worse earlier on in life. Although they seem to have caught it relatively early on and this has been my first lot of symptoms so I suppose that’s good?? Great to hear about your friend who lived to a good age and made the most of her life, sorry to hear you lost her though. Definitely going to try and make a start on a healthier diet - nightmare for me as I’m the fussiest eater in the world. I can only stomach about 2 vegetables and I hate eggs and fish! Thanks for your lovely reply and all the best to you xxxxx
Hi Katie…its weird I know, but some folk (like yours truly) are actually kind of happy to get a diagnosis of MS, albeit that no-one would ever wish for it. I say me included, because I had previously been diagnosed with a genetic conidtion, which mimics MS, but is rare and carries a 50% chance of being passed to my offspring. So you can see why I preferred MS!!! RRMS is the main type for which there are several DMDs and you will get information and a choice as to which to try. There is no common story as to how MS affects anyone. It can do a helluva lot or not too much to anyone with any type of MS. Please be assured, there is still a good life to be had with this guy in your life. The best advice I can offer you, is to pace yourself, get the best quality rest you can and always accept help when it is offered. Best wishes. Bouds xx
Your attitude of being glad of a diagnosis is fairly common. It tells you you’re not imagining things, and is a useful label for explaining symptoms to other people. Not that they’ll always have a clue what a diagnosis of MS means!
Your next appointment to discuss treatments is really important. Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid This explains what treatments are available. We are lucky (!) to have so many drugs licensed for RRMS these days, but having that wide choice brings confusion and fear.
The chances are that your choice will be restricted to those labelled 1.1 and 1.2, but could be virtually unlimited, depending on how active your MS is.
It’s important to be have an idea of the various drugs you’ll be discussing before the decision as to which drug you’d prefer is taken from your hands by a well meaning MS. It’s a case of the costs versus the benefits. So have a look, think about the side effects versus the relapse reduction rate, as well as the means of taking that drug.
You have a world of experience here, many people will do all they can to help. But your MS nurse will be (hopefully) the best source of help and advice.
Sorry and pleased you have been diagnsoed now you can move forward.
You are not being naive, i wish the media would stop painting MS as the Armageddon of life as we know it. literally thousands of people live MS with a decent life.
there are great strides thanks to societys such as this one (MS doing ground breaking research). Things have moved forward from the days when one used a hot bath to diagnose it.
I dont have medication as i have Primary Progressive MS, and there is even hope for people being diagnosed with that too with a new medication called Ocrevus which helps first stages ppms as well as RRMS.
Everyone is different with MS so i expect it is dealt with differently when medication is on the table.
If you have been diagnosed with RRMS perhaps you should address daily living board as a lot of RRMS on there who could probably help you more in choices.
Good luck, just stay positive, look after your health, eat well no processed or sugary foods lol, lots of fresh air, sun shine (well thats a tall one in the UK), excercise and FUN. dont forget the fun part. xxxxxxxxxx
Thanks everyone for your replies! You’ve all really helped and reassured me in these early days so thank you so so much. I’ll have a look at the link re medications - thanks Sue! Quite daunting as I’ve got the biggest phobia of needles so would rather not self inject but if I have to I have to. I also don’t want too many side effects as I’m going back to work after 2 months off this week - but I realise I’ll probably have some side effects with whatever I take. I Have already changed my diet quite a lot - but I am the worlds fussiest eater so it will be a challenge. I tend to think I’m at the pinnacle of health after eating 1 piece of fruit at the minute… If anything getting a diagnosis has taught me to just take each day as it comes - appreciate the good days and acknowledge there will be some bad, but I’ll get through it. I actually bought my first house with my partner the same day I was diagnosed so it’s nice to have that to look forward to! Again thanks for all your advice and positive words - means more than you know. Sending love to you all xxxxxx
Welcome ! Post dignose is a different journey for different poeople. The potently useful thing I can share for you is since my diagnoses over 2 years ago with RRMS I have not had any relapses. Big hugs, good luck & …just keep smiling ! But don’t use computer or I pad smileys or your post won’t appear.
Sarah so glad to hear you’ve not had any relapses that’s fab! Do you mind me asking what DMT you’re on? And chatterbox I believe there are DMTs in the form of tablets isn’t there? I need to get over my absolute fear of PML which keeps getting in the way of every decision I need to make!!!
Don’t worry about your age. I’m 55 tomorrow and have been dealing with RRMS since I was 15. Never had any DMT’s (there weren’t any back then!), and while it did effect a few changes to my private life, it didn’t really stop me from doing much that I wanted to do. It’s only been within the last couple months that I had to stop working, and I’m still able to live alone and do for myself. Just learn to follow what your body’s telling you. You’ll have some bad spells, but they should pass.
Yes, Tecfidera is tablet form. I’ve been on this for 16 months now. I was worried about Pml as well, but they monitor your bloods and as I understand It’s extremely rare to get pml if your levels are above a certain threshold.