Hi folks,
My first time here- not much of a clue what I’m doing as not usually an ‘online enthusiast’. So bear with🤯
Today , I was diagnosed at 3pm. Relapsing remitting MS. Right now I don’t really know what to think or how I feel. I am 53, so from what I’ve been reading quite ‘elderly’ for a diagnosis,BUT, looking back I have been having on off symptoms for 20 years! and it has taken this long for any medics to take it as a whole picture.
Blathering here as I don’t actually know what to say. The Dr today was utterly amazing. Brought up the DMT offer,BUT (another😉) I am really umm’ing and r’ing about it. As I am 53, My only (so far) problem is reduced sensation in my toes. I am thinking just to be monitored for a bit. I am still fully mobile without aids. So do I turn down the inflammatory volume- with all its associated issues , or just wait and see.
I am 60 and have been on DMDs for 20+ years and I will bite anyone who tries to take me off them.
But then my RRMS experience had been very different from yours. Mine arrived like a bolt from the blue when I was 37, and there was never much doubt about what the trouble was or how things were likely to go if I didn’t find a way of taking the edge off the aggressive disease process.
I credit DMDs with keeping me as well as I am, but then you are in better shape at 53 than I was, even with that help. It just underscores what a personal decision it is and how different our disease courses can be.
All I can suggest is you seek advice from your medical advisors when the shock has settled a little and you can think straight, and decide for yourself what sounds best for you. I am sorry about your dx.
I’m 54 and going through the diagnosis process of trying to get to the route of my issues. Mri scans, neurologist ect I have another appointment in 2 weeks. I too have had problems going back 20 years but only being trying to get a diagnosis for the past 3 years. I wrongly thought Ms was a disease easily spotted and diagnosed now I realise it isn’t easy and from reading this forum I can see many get a late in life diagnosis especially with rrms which I’m thinking I have.
Hi
I am 57 and have just been told I have MS (well told and then need to wait because they have now found panca in blood)
My only sign at the moment is a reduced sensation in my face.
They did write to me talking about first-level DMTs but that has gone quiet now.
Hi,
As Alison says, everyone’s MS experience is different. If your diagnosis is definitive as RRMS it is probably a good idea to start a DMT. The purpose is to slow the rate of damage and to try and reduce the impact of disease progression. Provided that any negative impact of any drug is small I would rather take meds than to regret not taking meds when they could have been effective. Always a difficult choice. In my own case I wonder; had I been offered (current) DMTs at an earlier stage of my MS would my level of disability be different now.
I am not bleating because there were no DMTs at the time.
Wishing you all the best
Mick
Thanx mogace
That is what I am starting to think. I think we’ll why not try them. So when I get seen again I will tell them that I want something that truns the inflammation volume down, but doesn’t wipe out my immune system completely 
Just managed to do my ‘exercises’ I am congenitally lazy:sunglasses:, but for the last few weeks I have been doing ‘the stairs’ up and down 10 times , as fast as 
. Then went up the loft to put suitcases in- so if up I can maintain this level of nonsense then that would be cool. I still work full time as well ach 
Forgot to say and can’t seem to edit, but I am on bucket loads of HRT - and that really does seem to help.
Hi both,
Thanx for coming back. Means a lot to know I am not the only one in the village😉
Today, everything that I do is of course the MS! I tripped over teenage kids mess, and thought “ oh, I only tripped over that because I’ve got MS” - not the actual reality of others leaving stuff strewn all over the house and yes, I ‘only’ tripped. Sunday , it didn’t bother me that I was a bit stiff- had sat down all day, but today it is clearly because of my MS!! I was born anxious, but now that is in full flow.
I think I will do the DMD at some point. The 2 weekly jab interferon thingy sound like a ‘good’ bet.
At this point, I have decided that I am only telling my husband- nobody else- why- I don’t want their ‘pity’ and I don’t want them to see the MS before they see me- if that makes sense😵💫.
Hiya,
I’d say first thing first; you need to give yourself some time to process the news you recived today and remember to breath…
If I can give you one bit of advice its to get yorself a notebook where you can write down any Q’s irrespective of how big, small, serious, sensible or plain daft/crazy it may be and take along to ms related appointments as 1: you might not remember to ask the Q on day of appointment 2: you loose track on the day and simply forget.
You might want to ask your partner to come with you on your early appointments; mine came wih me and scribbled notes for me as there was lots of info and I didn’t want to forget anything.
With regards to dmt"s where your concerned you can see of this website all the dmt’s so you may want to take a look prior to an appointment with an MS nurse which I’m sure you’ll recieve going forward or neurologist appointments.
With regards to who you tell then thats your call just don’t struggle with it just being you and your partner; have you got a close girlfriend that could be a ‘rock’ for you ~ lay down the ground rules:
No pity!
Treat me the way you alway have!
I am still me!
See me before you see the ms!
When I received my diagnosis over 20+yrs ago my neurologist spoke about me going onto dmt’s asap based on the thought process of it reducing the number of relapses. So I started Rebif (beta intereron) injections (self injecting 3x a week) which I did until 2020/21 and in that time I had 1x big relapse, couple of small relapses along with 2x optic neuritis which I think wasn’t too bad whilst working full-time in a demanding job that had me travelling all over the UK including Scotland, Ireland and enjoying room service Mon to Fri.
For me and teling people about my ms, I told a few of my work colleagues mainly due to the fact that I travelled abroad with some of them and I was carrying injections, some of us would twin in hotel and because my job involved staying away so much with colleagues I felt some needed to know - told them in hotel bar where several bottles of fizz made it easier (all bar hangover’s) but then alot of people I worked with for 20yrs never knew. For the majority of my ms journey my ms hasn’t /isn’t visible.
I’ve now changed my dmt to Ocrevus infusion and I’m now isolating having had the 2nd part of the 1st infusion and not due the next infusion until September; infusion went well and I’ve not had any side effects/niggles. With this treatment it’s 1 infusion every 6 months so for me it doesn’t impact me on a daily, weekly, monthly basis which for me is a better option but thats just me.
Take care and look after yourself
Vke
Me too. I’m in no hurry to come off that either. 
Thanx all for coming back.
Today I am in the ‘why me’ mode, still in the ‘everything is MS mode too🤦♀️. Even though I’ve kinda ‘known’ for a long time , someone else confirming that is tough.
Just an interesting question- when I started on HRT about 4 years ago , it massively helped with all my symptoms, which have turned out to be MS. I note on here too that many of us lasses are being diagnosed after 50 ergo menopausal. I must confess to overusing the Oestrogen as the more I slap on the more nimble I feel- what’s the link- anyone know?
You may find of interest info from this reputable source. Prof Giovannoni is a useful source of high quality info for many of us.
Thank you. Yes, I thought so. My GP recently asked me “ when are you thinking of stopping”. Response= I’m not . The difference in me when I started it was incredible. Life changing even.