Hey everyone! I am writing here looking for a bit of comfort because those past months have been hard for me- mainly emotionally really so I think I’m lucky. I think there’s something seriously wrong with this 2020, not only for me, I’m perfeclty aware. For most of us actually.
Few days before turning 22, I start losing my vision on my right eye. I was ignored for 3 weeks (they sent me home from hospital twice) because my eye was perfectly healthy so it was supposed to be “stress”. But I lost like 85% of my vision how was it supposed to be stress? It was not. I was diagnosed with optic neuritis and started with heavy dose of cortisone (IV for 5 days and tablets for 3 weeks) which helped me heal completely. Greatest news ever and yet soon after I find out I had other lesions on my brain- inactive. It was obviosuly shocking. Then the lockdown starts. I was supposed to do the lumbar puncture very soon after that but because of the pandemic it was delayed. Long story short: as soon as the lockdown was over, I was diagnosed with RRMS. So I had to go through the grief and shock to be diagnosed with such a serious disease so young. I know that prognostically is better to have it at a young age but it also means there’s more time to accuse neurological disability so it’s hard to digest that in 15 years from now (I would be 37 so pretty young) best case scenario is moderate disability (which for me is still a lot). But I’m trying to look at the positives:) I’ve started treatment with tecfidera and I tolerate it very well (despite the bad fame of its side effects to people), I found a great MS center, I have little brain damage and overall I’m good now. What made me sad again was the fact that in my country there is probably to be soon another lockdown and I think I might just go crazy somehow (?). I mean it’s hard because my parents both work at the hospital (double worries for them), I’m still processing this diagnosis and I’m gonna home again for months. I will be focusing on my academics, I’m doing yoga and runnning everyday and trying to keep busy but this year has been so surreal. It’s just hard. I know my problems are little compared to someone else might go through, I’m here just to look some advice from someone who maybe experienced this situation as well so maybe we can help each other and look for solutions!
Hi, an MS diagnosis is a tough one to get your head around at anytime, never mind during a worldwide pandemic. When I was diagnosed I thought my world had just fallen apart. It was ON that first flagged up all was not well.
I take Tec with no side effects. Adopt a healthy lifestyle, respect the condition you have but don’t let it define you.
Hopefully you’ll be years before anymore relapses.
Hi Suibian, I am sorry to read of your diagnosis. It is particularly sad when a young person is hit with this cruel disease.
I was 45 when it hit me and I am 68 now. I have PPMS. I was lucky in that I had my 2 daughters in my 20s. I was active and well until I became a grandma at 46. I did miss out on doing as much as I would like to have done with my grandchildren.
Back to you…there is still a good life to be lived even with MS. I`m so glad you are responding well to the drug therapy…; long may that continue!
The best advice I can offer you is to pace your activities, get good quality rest and accept help when it is offered.
Sorry to hear about your diagnosis, I’m recently diagnosed as well, but at 36 a fair bit older than you. Funnily enough one of my thoughts with all this was that at least I had my 20s, which were basically a decade of fun. But having said that it is better in the long run to be diagnosed sooner rather than later. I can’t help but wonder (and challenge) why you think in 15 years time moderate disability is a certainty? It isn’t. I have real life examples in my extended family that prove otherwise.
Anyway, I just wanted to share that with you. There are no certainties with MS at all. Be hopeful. It sounds as though your lifestyle is very healthy so that’s great, the rest is out of your control but please don’t think that disability will definitely come, it may not. If you’re lucky you may find in 15 years time you have what they refer to as ‘benign MS’ which means precisely that - it’s benign and may or may not flare up again in the future.
Yes, that’s so true. I guess a ms diagnosis in my condition (where now I am living basically symptoms-free) is easy to digest because I’m fine and recovered 100% from ON so it’s easier to be optimistic. But adding the pandemic on top of everything just makes things more difficult to navigate as it feels like this 2020 completely changed everything in a way- including the ongoing lockdown we are experiencing. I’m also good on Tecfidera, glad you are as well. Thanks for the tips. I appreciate it a lot. Take care
Hey there, well you have PPMS and you still manage to take care of your grandchildren I think that’s awesome and it shows how much you care about them I hope you get to spend more and more time with them. Thank you so much for your kind and positive message. I am gonna follow those advices. Take care
Hey, well by disabled I don’t necesserily mean motorically but there are so many areas that concerns me honestly (vision, bladder issues, cognitive function, fatigue, weakness, balance, pain) so there are sooo many aspects involved with ms that thinking about it gives me an headache! But still, thank you- one should not dwell on negative thoughts because there’s a lot of hope, especially because ms hits everyone differently.
Thanks for your message, I appreciate it so much really:) I’m glad you had fun in your 20s without this annoyance of disease, hopefully you’ll manage to have fun even with it. Hopefully even more so because we can be much more appreciative and receptive to good moments:) Take care
Pilates is excellent because it focuses on strengthening your core.
Running? well since I struggle to walk safely I will only say continue to do what you are able to do for as long as you can.
Make sure that you take medical advice if your feet suddenly become wonky (an official medical term) Avoid falling because you don’t want broken bones added to your MS.
There is no reason for you to feel despondent.
you have youth, fitness and who knows what else on your side.
I hope you get to spend more and more time with them. Thank you so much for your kind and positive message. I am gonna follow those advices. Take care