I’m hoping to just meet / talk to like minded people going through the same issues.
I’m nearly 30 and I don’t know anybody around my age with relapse and remitting MS so I find I’m bottling up all my feelings and thoughts.
Just wondering if there is any advice for the days you struggle? I’ve recently started Ocrevus so fingers crossed that helps!
Hi K, I’m newly diagnosed in November 21. With RRMS. I’m happy talk and answer any questions, you need. I’m newly diagnosed like I say but I’ll try my best with my experiences and hope to help you through it like we all will on here.
Hi I’m james from Birmingham …. Not long turned 32 and was diagnosed in June 2021 …. It really knocked me for 6 but I’m getting the best treatment possible you just have to keep a positive mind chin up and don’t let it rule your life !
Hi Im 26 and newly diagnosed in November 2021 with RRMS just waiting on my treatment, they have found abnormal bloods so they’ve been sent to rheumatology, so have got to wait for results to see what treatment I can have
Hi! I’m newly diagnosed with RRMS at 29 also and have now also gone onto Ocrevus! It’s certainly not easy to come to terms with having this disease and it is difficult knowing that nobody else can totally relate and even others with MS will have a different experience to you.
I try to focus on the positives-
- We’ve thankfully been diagnosed early - many wait years to gain a diagnosis
- We’ve both been thankfully put on the one of the highest efficacy drugs for RRMS and it also shows effectiveness for PPMS
- Medicine has already come so far and imagine where we will be in 10-15years time. My friend works in pharmacy and says there is increasing attention and investment into MS treatments.
- We have the NHS. Thank goodness because a dose of Ocrevus is something like 60k in the US
- The daily symptoms that are felt as a result of scarring on the myelin sheath will go down in time - and quicker if you eat well and exercise (something I’m guilty of not doing, but they recommend 3-5 times a week and I’m hoping to start this as I think the mental health impact of exercise is so important)
- Keep a symptom diary - I thought it was not for me at first as I didn’t want to obsess on the daily about every little feeling but instead I just write as and when I want to. I think it helps me to then not talk about the aches and pains too much with friends and family and my boyfriend, as sometimes I am wary of their responses and worry that they may find me obsessive or tire/run out of things to say back. Diary will also be useful to refer back to ahead of future neuro appointments.
- If I’m worried about a new symptom I make an actual note or mental note of it and then put that to one side and try to not dwell on it with the understanding that for a relapse to be real it needs to be felt for over 24 hours. This helps me separate out existing symptoms (you may find like me that you have many here and there in different forms, little niggles that you hadn’t thought much of before) and new relapses.
I’m not pretending I have this all worked out as it is definitely hard but hopefully you will find support networks where you need them including on this forum.
I have asked my MS nurse to put me on the list for therapy, although I expect the wait will be a long one - I’ll go private if my mental state gets worse as I do think that an independent listener with no relationship to you would be a good place to get things off your chest in an open and honest and unrestricted way - with people you know it’s not the same as you naturally add a careful filter.
Sorry for the essay but want you to know you are not alone! Like the others have said, all you can do is focus on the positives, live healthily, and don’t let the disease control you.