Hi, I am 30 years old and diagnosed with RR MS 2 months ago. I’ve begun my treatment immediately as I have enlarging lesions. My treatment was on Thursday and I’m feeling extremely low, depressed and sad - I can’t stop crying. I felt like this when I had my initial relapse and was given a course of very strong steroids.
is this normal, or has anyone experienced this before and have any advice ?
Morning 30 ms,
I’ve had my 2 half doses of ocrevus, last dose being November the 5th. I’ve not experienced that effect, but we are all different in how these drugs affect us. It may be an effect from the steroids you have before the infusion. I would suggest speaking with your ms team regarding this issue. I hope it settles down for you.
I am sorry that you’re struggling. You’ve had a heck of a shock, getting a life-changing diagnosis, trying to get your head round that and then having to focus on a treatment plan. Honestly, it’s no wonder you’re reeling. Please try to be patient with yourself. These are all big life events and there’s a lot of shock to get over and a lot of worries to process and many of us (me included) found that those early days were really tough to handle emotionally. YOu’re managing your own reactions, others’ reactions… it’s just hard, and there isn’t any way other than make it easy. You’re doing OK.
It’s great news that you’re on an effective DMD. That is really good progress, even if it doesn’t exactly feel that way at the moment. You’re doing what you need to keep yourself as well as you can be, and that’s so important.
Good luck with it all.
Hi @30_ms , It could be that the steroids or treatment are making you sad and teary but it could be the shock of a diagnosis of MS.
It’s a long time since I was diagnosed but as @alison100 indicates, many people go through a post diagnosis ‘grieving process’. Grieving for the loss of your old pre-MS life and the loss of what you felt your future life was going to be. A diagnosis of MS can be a massive life changing shock!
In days past , before the development of disease modifying drugs, a diagnosis of MS did indeed bring a very uncertain , shaky future.
These days however, there are something like 20 different drugs some of which are very, very effective in reducing or completely stopping further relapses / lesions. I’m on one of the first DMTs namely Avonex which in comparison with recently available DMTs is not particularly effective but after around 19 years of MS I am still mobile although admittedly I struggle to walk more then 10 mins.
In the 19 years since diagnosis I’ve got married, travelled and generally enjoyed life. These days, at age 71 , my wife and I are still making plans for the future , where to go , places to see and visit. So , it might well be that MS will make your life more difficult but don’t give up on your plans and dreams. Be gentle and kind to yourself, grieve for a while, but read up on things you can do to help yourself in dealing with MS ( diet, exercise, stress reduction / dealing with stress and anxiety) and make plans for the future!
Hi @30_ms you will be ok. Maybe you don’t feel like you will at the moment, but, you will be, eventually. As @alison100 & @Hank_Dogs say, be kind to yourself, be gentle on yourself, be patient with yourself. Let those emotions flow.. it’s a natural process. Try not to let your ms define you..define your ms if you so wish, but not the other way around. Being a unique individual you’ll find your own way of coping and dealing with your ms and how it might manifest in years to come. With the DMD treatments now available you could well be reasonably mobile without any drastic new symptoms for decades into the future. Make those plans. Live your life as and how you want and how you can manage it. Wishing you all the best not just this moment but, long into the future.. your future.
Hi there,
Receiving this diagnosis is such a lot to process. You’re doing great, let yourself feel all the feelings. It will settle in time x
Thanks so much for your compassionate words I really appreciate it.
Thank you for your advice. I did contact my MS nurse and she thinks my body doesn’t react to steroids well, as I already had depression before being diagnosed.
I appreciate your advice.
Take care and I really hope things settle down for you very soon.