Good Morning everyone! My name is Lynn. I was diagnosed back in 1978. That makes me an old-timer. I retired in 2018 when it became too difficult to continue to work. It was a rough transition and took a toll on my ego. However, I have adjusted and I am loving retirement. I look forward to saying, Hi to everyone.
I’m Carly, I’m 33 and relatively new to all this having being diagnosed out of the blue last April after my first ‘relapse’ in Jan and my second in April. Currently not taking any medication as I haven’t had a relapse since touch wood and thinking about starting a family in the foreseeable.
I’ve found this forum so helpful over the last year with helping me deal with the initial shock of diagnosis and giving me the confidence to make my own decisions when my nurse/specialist have differing opinions over medication.
Hi my name is Clive and I was diagnosed in 2002I and this is my first visit to the new forum hope everyone is having a fantastic MS Awareness week
Hello everyone, my name is Sofia I’m 38. I was diagnosed last year and I’m still trying to cope with Ms. This is my first time reaching out since I been diagnosed.
Hi 1st time on new forum. I was diagnosed “unusual MS, but RRMS”, whatever that means Sept 2020… it’s been a long and difficult journey since as had two brushes with cancer to deal with on top of Covid isolation. But I’m hoping to be started on a DMT sometime this year. Nice to meet you all.
Hello everyone, I’m Amy, 23 years old and was diagnosed with RRMS in December 2020! On plegridy and getting by well
I have had MS for the past 44 years. I hope I will be able to share some perspective for people newly diagnosed with MS.
Hello! Diagnosed with RRMS in 2000. Lockdown has taken its toll and I’ve deteriorated physically over the past year. I was commuting daily into central London until lockdown 1 but now I struggle to walk far at all Having physio and waiting to get an FES fitted (at my own expense). On Tecfidera and apart from my stupid left leg I’m tickety boo!
Welcome to the forum.
HI Pam Thanks for the Welcome the new forum looks fantastic
Hope the FES fitting goes well. I have been using one for about 4 years and it has really been a game changer for me.
Hi Sofia, well done for reaching out. An MS diagnosis is a huge shock, especially for a young person, but you’re not alone. The MS Society will very likely be running a weekly group in your local area, find out on the website where it is and see if you can get there. Seeing and talking to others in the same situation as yourself really does wonders for your morale and self esteem, it’s a great chance to make friends.
Also if you’re in Kent, there’s a group called YUMS for younger people with MS, check out their Facebook page at:
If you’re not in Kent, there’s likely a similar group in your local area, get in touch with the MS Society for help finding it.
I’m trialling an FES on loan at the moment and can really feel the benefit even though it’s not set up quite right. Odstock (the FES provider) are a bit of a nightmare currently. I thought I’d get a better service going private but it’s not panning out that way so far Hey ho!
Hiya Tim. Thank you so much for the advice . I will do all the best
Stick with it if you can. Odstock had a much better service before lockdown. I used to have a one to one consultation for an hour which was a really valuable. I only go once a year but the FES was always changed depending on my walking. I had an online consultation last year which wasn’t particularly useful but under the circumstances better than nothing. Hoping it gets back to how it was soon.
Sorry to hear you have RRMS young - but the earlier you are diagnosed the better, as you know.
In case you’re not aware, there are social groups for young people with MS around, like YUMS in Kent (who have a Facebook page). They go for meals in pubs and for days out together. It’s a great way for young people with MS to make friends, and get emotional support from people of their own age who completely understand what they are going through.
(I’d join YUMS myself, but at 50 I can’t claim to be young in body anymore - only young in brain, lol!)
Take care with physio. Make sure you remember that you should progress at your own pace. Make sure you know what the warning signs from your body are that tell you when it’s had enough for now. Don’t put pressure on yourself, e.g. like trying to please the physiotherapist, and overdo it.
I did that, and did myself more harm than good.
Thanks Tim. It’s a neuro physio that I’m seeing and she’s been really good. We’re following an MS Society programme and focussing on core strength. It is sometimes hard to recognise what’s overdoing it and what’s just my weak body responding to exercise It’s a long slow process that’s for sure!
Welcome Carly! Touch wood you stay relapse free. All the best!
Hey Sofia! This is a safe space. I am 36 and was diagnosed 6 years ago. Take care and welcome!