Hi Everyone, I just wanted to introduce myself. I am John aged 32, I was diagnosed with RRMS in April 2020. I had 2 years prior to that being passed between hospital departments after being admitted to eye casualty with optic neuritis. My older sister of 2 years also has RRMS which I’m told is quite surprising considering MS isn’t hereditary. So luckily had a little understanding before my own diagnosis. I was very lucky as at the time of diagnosis as Nottingham QMC hospital had a deliver MS study which I am now involved with. The main aim of the trial is to understand if aggressive treatment at the start of diagnosis delays disease progression. At the time of diagnosis I had only 2 lesions on my brain and started on Rebif. This medication was short lived as I suffered a relapse with lhermitte’s signs so medication was progressed to Mavenclad. Just finished my month 2 dose with nothing now for another 11 months. All seems to be going ok. I have always been an active person but the last couple of years fatigue has really hit me hard. I was wondering if anyone more experienced has any advice which would help newbies like myself? Thanks John
Hi John, sorry to hear that you’ve joined our exclusive club. I’m a relative newbie too. I was diagnosed with RRMS some 26 months ago. Im a great believer in sensible diet and lifestyle choices, so that’s where I’d start. You should also be taking at least vitamin D3. I’m a vegetarian with very limited dairy intake and I believe this helps with MS fatigue, it’s very common but I don’t suffer from it, of course, I can’t prove any of this. Otherwise, there are plenty of resources out there, so worth doing research, education is priceless. Stay safe.
hi
when the fatigue hits, you need to take time out, if only to go for a brief walk outside.
learn to pace yourself.
the consequences of overdoing it are severe fatigue, which builds up, so if you don’t allow yourself to rest it will be even worse tomorrow.
be kind to yourself.
Hi John…I must say what a handsome chappie you are!
Welcome to our club…the club we wish we didnt need to join…but having said that, we are a very supportive lot who do our best to help each other.
I`m an oldie hereabouts…68 and had Spinal PPMS for 23 years!
But it took 22 years to get a full and proper diagnosis. I`ve been round the block a bit…17 neuros and 6 hospitals! 4 MRIs, 3 LPs, 2 EMGs, a VEP and oodles and oodles of blood tests for regular and rare neurological conditions. It was fun (not)!
Fatigue…ahh yes, that little blighter! It is most probably the most common symptom. It can take a while to work out how to manage your`s. Best advice I can offer, is pace your activities, get the best sleep you can and always accept help when it is offered.
Love Boudsxxx
I am sorry that you have joined us, but delighted to hear that you are one one of the highly-effective treatments. They really can stop MS in its tracks. There is never a good time to be dx with a chronic progressive neurological disorder, but the availability of those drugs really is a game-changer.
Good luck, finding your own path through it all - and you will.
By the way, if you want to read about the role of genes and heredity and MS, there’s good information on the main part of this MS Society site.
Alison
Hi Retro, Thank you so much for taking the time to read and reply to me. Diet is definitely something I need to work on so will take your advice on board. I am taking Vitamin D3 in a high dosage recommended to me by neuro. It’s interesting you mention dairy as I noticed a change in my fatigue levels switching from Full to semi skimmed milk. I thought it was just coincidence but might explore reducing my dairy in take as it is relatively high. I will certainly educate myself further. Take care
Hi Catwoman, Thank you for your reply. That’s really handy to know as times over the last year I’ve continued to push myself. I think on one occasion I have got to the point where I had severe fatigue as I couldn’t move from my bed for a couple of days. Even climbing the stairs I had to nap after.
Hi Bouds, I definitely read that with a smile, Thank you for making my day. I have been a member in the background for 5 months reading posts and I have really noticed how helpful people on here are. I have also seen your name pop of on many offering advice 
PPMS of the spine makes my complaint of fatigue and RRMS so minor. Really does put things into perspective and how strong people can be suffering for 23 years. Wow they really went through the mill diagnosing you! Please don’t take offence by me asking is this down to little understanding of MS at the time of the tests? Or just poor medical practice? Thank you for you advice on fatigue. I can some days sleep 6 hours feel refreshed and energised and then other days sleep 12 and want to continue sleeping. Another member suggested a good diet to try help manage it so hoping that will have a positive impact. John x
Hi Alison, I must say that Mavenclad at only 3 months in has had a real positive impact on me. Some of it maybe placebo but certainly feel a lot clearer with my future recently. Yeah, I read that the medical advances of these drugs have really had a positive impact on the MS community. I hope that the trial I am on can show that early aggressive treatment can have a positive impact. My understanding is currently you have to be within a set criteria to step up in treatment and by that time it’s too late. I will definitely look into the role genes play as I have a 3 year old son and would like to understand more about his risks of developing this. Thank you for taking time out to read and reply to me. John