I m James, 39y old from South West London,
recently been diagnosed with MS, currently having my second ‘episode’ in 3 years, and feeling pretty rough to be honest, Trying to navigate the baffling treatment options and or ignore it all at the same time! looking forward to reading others experiences in the hope it will help, feel quite overwhelmed at the moment!!
Gosh only time i dont like saying welcome.
I think you have to take time for yourself. a deep breath in. you have been given a diagnosis of a long term illness which has a lot of twist and turns. Way too much information and a lot of it contradictory.
the one good saving grace is it appears you have RRMS so lots of treatment options out there. I have PPMS no treat ment options. Yes there is one now on the table but i have had mine too long to be a candidate the damage is already done.
One thing i will say is dont overload yourself with too much. I found a great doctor of MS on youtube he runs his own clinic in USA. His videos are amazing and informative and i have learnt a lot about my disease. I wont put link up as it will just get removed I expect but i can text you his name. He is highly regarded. I know USA but for me their neurologists seem to know more then ours lol. I didnt say that.
I have experience of it. lol.
anyway for me i cope with it. I focus on other things, have a hobby wild life videos, my children i support in Kenya, i run 3 chicken groups on facebook lol, even though i dont have them anymore. I eat really well, and i get good sleep as well as i can. I try not to over do things. I have learnt to listen to my body and pace.
Life is changed but we just have to adapt to the changes, funny enough i can liken it to covid restrictions lol. which has changed the way we live well i live like that anyway.
take care, i am sure others will be along to help you. I cant advise on treatment, just support you.
here is a hug from an old lady. ME lol 70 this year.
Welcome to the forum. I’m sorry to hear you’re in the middle of an episode at the moment.
Relapses vary tremendously, they present in so many different ways; some can be quite mild and others far from it. I’ve had MS for many years and get away fairly lightly, my episodes can be many years apart.
Now, treatment options: Have you found the MS Trust’s page on this? I’ll add a link to it below. I’m guessing you’ve been offered a DMD (Disease Modifying Drug) and these can be confusing. Firstly, talk to your team, MS Nurse and Neuro can both help a lot, but you may want to do your own research.
You can ask anything on this forum, it’s likely someone here may have experience of the drug, or symptom, in question.
I’ve only used one DMD myself, Rebif, and I doubt they’ll offer that one as I think there are now better things available. If you don’t get on with a certain treatment, they will usually offer an alternative.
Here’s the link… https://mstrust.org.uk/about-ms/ms-treatments/ms-decisions
Hope things improve soon,
Apologies that should say I don’t mind travelling !!!
Ben / crazy chick ,
Many thanks for your replies, nice to feel welcomed , my relapse continues and I started on pregridy on Friday so it’s been an interesting weekend of feeling like have I have flu, not the end of the world but not that helpful !!
Your replies were full of (unfortunate ) experience and knowledge , I appreciated you taking the time to reply .
I’ve been looking for some support in my area (south London) my friends and family have been very good equally none can really relate , are there there any local support groups ? I don’t like travelling , be nice to sit down with some fellow sufferers to hear other people’s experiences. I know covid has disrupted a lot of it, but hoping things have loosened up alittle ……anything ideas? feel free to reply ….
All the best
Hi James, there is a group that has been meeting in the White Hart Pub in Godstone that I was planning on getting along to (as I live in Godstone). Covid has put paid to it at the moment but I am reasonably sure that it is going to restart. I have only just joined this forum which is the reason for my rep ly being so long after you posted. xx
Thankyou that’s awesome! That’s not too far from me at all!
How do I get updates if and when it restarts?!