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Newly diagnosed treatment options?

Hello, I've made a new thread as I was diagnosed yesterday with RRMS. It's been a shock and I'm fully aware I've not come to terms with it so I've a few questions. I've been told to look into treatments to find which one I prefer but how do you choose? The risk/reward on some is terrifying the thought of contracting a brain disease is terrifying then there are others which aren't as effective but less risks.. how do you choose between them? I've been told I'll be having more blood tests to broaden my options in treatments etc but not sure on why. What is a normal life like when you're newly  diagnosed going forward? I'm aware I'll be called soon by an appointed ms nurse to discuss things further not sure when That will be I think within 6 weeks? It's all very new and information I was told yesterday from the neurologist I've forgotten even with my notes I took as I was in shock. I just want to know peoples personal experiences from having the call with the neurologist to confirm diagnosis and going forward. I'm lucky to have my family and partner around me at this time which makes things easier but nice to talk to like minded people who have had similar experiences. Probably doesn't help I have anxiety in general !  Thank you Laura x

Hi AprilLou

Have you looked at the mstrust.org.uk site?

look at their MS decisions page which gives an overview with risks and benefits of each drug.

it looks fairly straightforward to use.

have a read and come back here if you have any questions that we can help with,

Wishing you all the very best.

You will be alright ranging from fabulous, through ok and with the odd bit of rubbish (like normal life).

Your MS nurse will be one of your best allies.

If anxiety is an issue for you, I would highly recommend Breathworks Mindfulness Meditation which is available online at

As the name suggest it is based on breathing exercises and is really calming.

Good luck xx

I’ve had a look and still very apprehensive about it all which makes me nervous however I’m sure next steps speaking to a nurse etc etc will help me :slight_smile: thank you so much for your advice something I will really take in to consideration! X

Hey, how are you feeling now? I was diagnosed a few days ago and like you I feel overwhelmed.
did u make a decision on treatment? How long did u wait for a nurse to support you xx

Hi @AprilLou and @Sandyshell - sorry to hear you’ve both been diagnosed but I’m glad you’ve made it to this forum as it’s incredibly supportive and was a lifeline when I was going through my diagnosis!

I found that my neurologist wasn’t particularly helpful with regard to practical decisions or advice, and I found that really frustrating at first - once I’d met my MS nurse for the first time I realised that she’s the one that will provide support, information and advice, and the neurologist is mainly there to order tests and review results! I had a lot of questions after my diagnosis and my first appointment with the MS nurse was brilliant - she spent a lot of time getting to know me and answering all my questions, and she shared her mobile number and email address so I knew I could get in contact at any time if I was worried or had more questions. I think seeing the MS nurse will help things feel less overwhelming for you and answer a lot of your questions :slight_smile:

With regards to treatment, there are a lot of options but generally different treatments will be suited to people depending on the severity of their symptoms and the frequency of relapses, so the MS nurse should be able to narrow down your options and then advise you based on their experience. I’d had relatively mild symptoms so was recommended copaxone as it was fairly straightforward with limited side effects. The treatments that are potentially more effective also have a higher number of side effects, so the decision is usually to start on a treatment with fewer side effects and move to stronger treatments down the line as on balance the severe side effects aren’t justified if you’re currently managing ok.

I hope that made sense and was helpful - essentially try not to worry too much (easier said than done!), do some research yourself and make a list of questions, and then let your MS nurse support you :slight_smile:

Hi @AprilLou , @Sandyshell , @SarahB1375 and all,

Thank you for all your comments so far.
Like @AprilLou and @Sandyshell, I was diagnosed with RRMS a couple of weeks ago. People keep asking me how I am and I’m okay - little wobble after initial chat with the Consultant during the confirmation but I’m okay. All the information I am now receiving though its very overwhelming.
Had first appointment with MS Therapies Nurse yesterday and like @AprilLou had bloods etc done and waiting on a call to decide treatment.

Thank you @SarahB1375 for your calming words re treatment - always thought it’s going to be a trial & error system to find the best one.

Can highly recommend some meditation - go to small class on a Sunday morning and its brilliant, really sets you up for the day. :smile:

Thanks all and this seems a friendly and knowledgeable forum so will definitely be back. :kissing_heart:

Best wishes and stay well. :rainbow:

Hi @EllieCC, I’m glad you’re doing ok after your diagnosis! I was lucky that I only really had one treatment option to consider because it kept being recommended for me - I hope that choosing your treatment goes well and you have plenty of support in choosing :slightly_smiling_face:

Meditation sounds like a great idea - I do deep breathing quite a bit but keep meaning to try meditation and yoga to help strengthen my mind and body!

Good luck with everything and keep us posted :slightly_smiling_face:

Sarah

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Hello sorry for delayed reply I’m trying to get my head round this new site ! So basically now I’ve spoken to my nurses a few times received information packs and hopefully start treatment within 4 weeks (probably 3ish now) I’ve chosen copaxne as it seemed the best option for me. But just to make something clear my nurse mentioned to me you can always change to something else if you find it’s not working for yourself :slight_smile: I’m not sure how mild/ serve my ms is yet I’ve had 2 relapses one with my face being numb and another half my body not working so between those two it’s hard to pinpoint where I stand I was advised on anything pretty much from copaxne to ocuverus apologises for my spelling also ! It’s a slow process I’m finding now but I’m sure we will all get there. Some of my previous relapse symptoms are going a little each day I can control my left hand now ans when I compare that to a month ago it’s a big relief and some hope. Xx

Hi all,

Thank you all very much for your reassuring replies and happy thoughts.

Thank you for your understanding.
I am feeling better than when I last messaged but now there are a lot of decisions to make; mostly about treatment.
Myself and hubby recently met with an MS Therapies Nurse to discuss DMT(?) medication options for me but trying to decide between these is difficult. (Should it be this difficult?)

I have also ordered some vitamin D3 as recommended by my Consultant, the Nurse and all you lovely people.

Still stuff to sort out, applying to Gov.uk re blue badge, filling out a form to inform the DVLA, advising my car insurance company once DVLA are advised, applying for parking permit to park at work…the list is endless…

I suppose it is all still very overwhelming.
Sorry for my little rant, just seems a lot to do. :crazy_face: :rainbow: