New to ms

Good afternoon everyone, I have in this last week been given the news I have MS. This all started in 2016 when I was 27. I lost sight and my eye went completely lazy, numbness down one side I was given mri’s lumbar punctures, steroids ok in iv drips while in hospital for 7days, and then had 3 years symptom free the last year I have had more symptoms and stronger affects. I have seen specialist more MRI bloods the works. I now have a meeting with the ms nurse on Monday about medication. I just wondered if anyone has any information about what kind of treatment I may be offered as I am worried as I still work and have 2 small children and alot of what I have read the medication is very strong. Kind regards Robyn x

Hi Robyn

Discuss this with your MS nurse.

The less potent DMDs are easier to manage.

I started on copaxone first which was so easy to use, a daily injection using an injector pen.

I used it when my kids were at primary school.

Many people would say that you should be using a DMD with a better result but these are more prone to side effects.

Good luck with whatever you decide to do.

Carole x

Hi Robyn,

I’m newly diagnosed too and have also had a number of separate relapses this past year, including the latest that’s been ongoing since Boxing Day.

I met with my MS Nurses for the first time on Tuesday, they both introduced themselves, as I will be seeing one or the other over the course of time, then one of them took me through everything. I came out of there so much calmer, every worry and question I had was patiently answered (don’t forget to write down anything you want to ask, before you go, so you don’t forget), everything I hadn’t thought of or didn’t even know about was explained, I was given a heap of information booklets and some websites to visit. It was very, very helpful. All I would suggest, and I wish I’d thought of it sooner for myself, is to ask if you can voice tape the meeting on your mobile phone, as there is so much to take in that it would be useful to have it there to refer to when you get home.

I was put on steroids for 5 days, which I just started yesterday, this is because I have active lesions and am currently symptomatic, this will apparently make me feel much better and also put me in a better place to start the DMDs.

Because I have had numerous relapses this past 9 months, they have offered me Mavenclad (tablet) or Tysarbri (intravenous), the latter being the nurses recommendation, so I have to now chose between those. Both of these treatments are for ‘very active rrms’ so I believe the type of drugs we are offered depends on how troublesome and often our symptoms have been recently.

I was told that it isn’t an instant step to taking DMDs as first you have to decide which one, then they have fo apply for the funding (for instance, she told me that Tysarbri costs £21,000!), then there are various bloods, urine tests and other tests that they have to do before we start, like our white blood cell count, checking for HIV, Hepititis, Tuberculosis, JC Virus, Pregnancy, Liver and Kidney function, vaccination against shingles, a recent MRI, it varies depending on which drug we choose. Then, when we are on the drugs, there are various monitoring tests done as we go along too to keep us safe.

You are young with 2 kids, I am now 54 with 2 grown up kids, my first born in 1989 like you, but I now that I know about MS (only ever mentioned to me for the first time in my life in Oct 2020), I can trace my symptoms back at least 22 years, possibly even further to when I was 27. When I first found out it might be MS, I was so angry that nobody had picked up my numerous symptoms before now, I had raised two children as a single mum, with constant health issues and debilitating fatigue and all I could think was, would my life have been better if I’d known sooner and been able to have the drugs to control it? But I’ve moved passed the anger now with the help and advice from the wise ones on this forum :slight_smile: Now I am pragmatic, I’m dealing with today and tomorrow and not looking back. For you to be diagnosed younger, you have a better chance, by all accounts, of getting this under control with DMDs, so that you can be your best self for you and the kids. The nurse told me that she wants me to have the best chance of knocking these returning relapses (at least 4/5 since May) on the head, which is why she’s offered me these drugs as they have very good results, 75% and 90% effective.

So I have to make a decision, and so will you, but I can tell you with the help of the nurses and doing your own research you will get there. I have already made one decision and that is… that I AM going on DMDs rather than the route of not taking them, because if I can have any amount of years free from symptoms, after all these years of NO treatment, then YES PLEASE! Now I just have to decide which one!

I hope your experience with your nurse puts you at ease next week, as it did me. Upon leaving the nurses told me they are always available Mon-Fri via phone or email, for ANY questions, concerns, new symptoms etc and to never feel like I am bothering them, which is wonderful and comforting for us to know that the help and support we need is just at the end of the phone.

Take care x

Thank you for the reply, this is what I was out on and so far so good. I hope you are well. Thank you x