im new to this forum and this is my first post. I was diagnosed with RRMS 10 days ago. My neurologist put me on a 5 day course of steroids. I’ve suffered 3 relapses in short space of time. First my balance and spatial awareness went then I had double vision and my right eye was struggling to move when I looked left or right. I then had a relapse where my right side of my speech suffered, the right side of my face and my speech went numb and I was slurring my words and struggling to get words out. The steroids I was told are to help bring the inflammation down which initially helped and my speech can back but today I’ve woken up and my speech has returned and I’m struggling to get my words out. I’m so upset and really scared that this is how I’m going to be for the rest of my life. I know I was diagnosed with RRMS but I’m so scared and in a bad way. I’ve been off work for 5 weeks and I’m 26. Everyone I have spoken to who has RRMS says that everything will come back but it’s taking so long and I don’t know what to do. I’m so scared please can someone out there help who has had similar symptoms or gone through the same thing. I don’t know what to do.
r/r usually does recover to some extent thats true
i believe current thinking is to get on a drug (neuro will discuss options with you) as soon as poss.
i aint going to launch into how ms has affected me cos i dont think that will be of help to you right now so what i will say is that regular life goes on-it does take some adjusting but its not impossible. for me-sense of humour is essential, tho i appreciate that you think theres not much to laugh about currently.
talk and discuss but make sure its your informed choices.
thank you for your response. I’m just so scared that things won’t return to normal even though I’ve been told by my neurologist that with my RRMS that it will. I’m scared and in shock. It’s so hard, I felt better of the last few days and was feeling positive. Then my speech problem came back
even if they dont return to your previous ‘normal’ (i think normal is over rated anyway!) then u will find a way of adapting-i know you will once your head starts to get round this ms malarkey…
The answer to your question, " is this how I’m going to be for the rest of my life?" is “No”. It is not always going to feel the same.
You will have good days and bad days, just like everybody else does. However, what you’ll learn is, that you’ll understand how to face up to MS and not allow it to take over your life.
I’m not able to reply fully at the moment. I’ll just say that you have come across the best thing since sliced bread. This forum is a group of people who are affected by MS. And together we are a repository of enormous experience, intelligence and compassion, the like of which I’ve never seen before in my 60 years.
There’s always be someone here for you, mate. What ever you need to share. OK?
So sorry to hear what you are going through. I’m only recently diagnosed myself (my journey started with a trip to A&E on the last weekend of February). I have no real advice re. recovery from relapses (save that 5 days of steroids and about three weeks had my numb toes back to normal). Trying to get your head round this is hard - and I’m not there yet - but I have found gathering information and focusing on the things that can be done to help manage this intrusion helps.
(1) It is not the fast track to a wheel chair I feared (something like 70% of MSers don’t use them 20 years after diagnosis)
(2) These stats will change in our favour - MRIs (only used since the 80s), DMDs (only around since the 90s), Lemtrada (only licences 2014) and the new guidelines on early treatment/ diagnosis (published last year) and the wonderful new drugs (for RRMS and progressive types) in the pipeline will be game changers
(3) there are things we can do to make ourselves more resilient to attack - diet/ exercise/ mindfulness etc. These are being researched all the time.
Another site aimed at younger MSers is Shift: MS which, like this site, I have found super useful.
thank you you for your kind words. I’m so sorry to hear that you have also been diagnosed with MS. Getting my head around it is the hardest part of all this. And when I say hard I mean it’s extremely hard. Even right now as I’m writing this I keep making mistakes whilst pressing keys and it’s so hard to to feel positive about it all. Because my speech has been affected today but was 99% better last week I feel like this is a big blow to my confidence as I was really starting to feel like I can fight this. Today I called my neurologist to ask him if for sure his diagnosis is RRMS. I can’t stop my negative thoughts about what if this is how I’m gonna stay for good (slurred speech, unbalanced with lack of coordination and blurred vision) thing is my family have told me that it must be RRMS because of how my speech was back to normal all of last week. And if it was permanent I wouldn’t of been better last week. I’m sorry I’m going on a bit. I’m still in the phase where I can’t believe this is happening to me and feel it’s causing me to dip in and out of depression
I am really sorry to hear of your diagnosis but please be assured it is natural to feel as you do right now. When you feel able perhaps Google ‘Kubler Ross stages of grief’. When anyone is diagnosed with a chronic illness it is normal and healthy to go through a grieving process, as you are essentially in shock and also mourning what you expected your health to look like now and in the future. It is useful to see it laid out and it’s a cyclical process, so you may move between the stages, to and fro, until you inevitably come to acceptance.
You’ve had some great advice above. What I would say is that if you are feeling depressed, you need to see your GP as soon as possible as they will be able to offer you treatment (not necessarily medication) to help you manage and cope.
there will come a point when you will want to meet other people with ms.
the ms society will have a group somewhere nearby.
also the ms therapy centres are brilliant.
these are usually on the outskirts of a city.
i go to trafford ms therapy centre (just outside manchester).
the best thing about it is the forming of friendships.
i usually spend an hour chatting before having one of the therapies.
i usually have HBOT (hyper barric oxygen therapy) which involves sitting in a group of 8 in a decompression tank, wearing a mask through which you breathe pure oxygen for one hour.
please look after your mental health because it is only natural to feel turmoil
most of us have had anti depressants at some stage. i refused them at first but later i requested them.
i took them for 12 months and they really helped me.