Last reply 2 months ago
New to MS – wondering what treatment

Hi there,
I was diagnosed with a mild form of MS in September 2017 after what I now understand as two relapses of Optic Neuritis 10 years apart (Jan 2017 and July 2007. June this year I had another relapse but in a different form beginning with sinusitis and ended up having so spend a week in hospital and 3 days of a steroid IV.
So now I have been advised by my neurologist that she is going to book me in to see an MS nurse who will handle my case and recommend and help me decided what treatment to go on.
She gave me a link to review from the MS Trust website https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions but I really wanted to find out from anyone else if they had any experience with any of these? I have RRMS and the neurologist did mention that there were some intense options where I may have to spend 5 days in hospital on a drip or some that I can take as an outpatient for a couple of hours etc. What does anyone think? I’m not sure I will be able to get 5 days off from work to do the in-patient option 🙁

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vixen
2 months ago

Hello @muggz, you have a good start in being given the link above. It’s quite a bizarre phrase to be told you have a mild form of MS (akin to being told you are mildly pregnant, for example!). If it’s a non-aggressive form you have then that’s great news. If you enter any of the DMDs in the search box, it will take you to previous Shift posts and many experiences. It’s great that you will see an MS nurse, she will go through everything, and what support you will receive along the way. Like you, my own choice was made to fit in with lifestyle and that suits me great (Tecfidera). There are side effects with all of them but again, there are so many useful tips on here which will really help. Good luck!


stumbler
2 months ago

Hi @muggz , it is down to you to do your research, so that you can take an active part in any conversations about treatment. And, the weblink supplied is a good place to start.

You do need to understand the available options, so that you can focus on the ones that you feel you’d like to try,

You shouldn’t worry about your employers and the potential need to attend five consecutive days in hospital. Once they know that you have an MS diagnosis, they are legally obliged to help you keep your job.


grandma
2 months ago

I was dxd with rrms 25 years ago. No drugs available then, a year later Avonex came out heralded as the answer to all our problems if you were rrms, agreed to go on the original placebo trial, NICE said yes just before it started so we all got the ‘real thing’ 4 years of trial, great results for me, company gave lifetime supply to all participants of the trial, great because even though nice said yes, all the hospitals said we can’t afford it. Lots of fundraising by colleagues and friends across the country especially in certain areas where the queue to go on it could be 5 years,things have changed and now there is a choice of dmt’s so take your time making your decision. Don’t be afraid to ask questions and go for what’s right for you taking into account age, type of ms, lifestyle etc., By the way, 25 years agoI lost my job because of my ms, couldn’t get another onebecause if you told the truth on the application form you didn’t even get the interview. If you didn’t tell them and then had a relapse, you were fired for “withholding relevant information” thank got things had e changveour cosy have tompyou sufficient time if for treatment, and they are legally obliged to make ‘reasonable changes’ to accommodate you, be that wider doors, moving desks, altering hours etc., Good luck😍


muggz
2 months ago

Thank you all for your responses. It is very confusing as i am still waiting on the nurse. In the mean time the symptoms are frustrating. Most days I am feeling dizzy and the vertigo tablets that I am on don’t really seem to be making difference. Also my shoulders are so tight and most of the time them and my arms feel like I am carrying about weights 🙁
Bring on the meds 🙁


stumbler
2 months ago

@muggz , Chase up the MS Nurse, explaining that you’re in a bad way.

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