Hello. I was diagnosed on Friday 7th September 2018 with RRMS. This comes after initially being diagnosed with Optic Neuritis back in 2013. I had an MRI then which showed 3 lesions on the left side of my brain and then this year, April time I developed pins and needles in my feet then next leg, thigh, stomach arm. This is still not fully correct and I’ve been told in still in relapse, so I spoke to a MS nurse who felt I needed another MRI and this last one came back showing another lesion has appeared. With all the above my Neurologist told me they now have diagnosed me. Even though I already in my own mind knew this could be it, it still has hit hard and it’s only two days since being told, and im trying to process it. I am a 41 year old single Mum to two girls, 17 and 10 years old. I suppose I’ve come here for some help, support and well I don’t know, just feel all over ATM, mixed feelings. Thanks
it takes time to process how you feel when landed with a diagnosis.
however you still are the same person you always have been.
take your time in this coming to terms.
then you can plan how to resume your life.
the things that helped me are:
keeping in touch with friends, it means so much when an old friend texts or messages me on facebook to arrange to meet up,
getting out and about. i joined my nearest ms therapy centre and go there every tuesday. having contact with people who are going/have been through the same things.
i even set up my own facebook group so that people who live reasonably close can meet up for lunch. and gin!
i am about to start going to a pilates class run very close by, invited by one of the ladies in my group.
your 2 girls will be at the forefront of your mind.
i’m sure there is a booklet available, either from here or the ms trust.
have you told them yet?
certainly your 17 year old can handle this.
you could ask her to look out for her sister, praise her and ask for her help yourself.
fatigue is difficult to explain, as are each and every symptom.
you need a “safe word” like ‘flipping ms again’.
look after yourself, take any help that is offered.
believe in yourself.
Caroles absolutely right, an MS diagnosis doesn’t take mere days to get over, you need to give it time to bed in to your new future.
Don’t feel you have to ‘accept’ or ‘come to terms’ with it. Allow yourself a bit of ‘aaarrrgghh’, ‘ why me’, ‘it’s not fair’, ‘what about my daughters?’ And of course, ‘what the hell happens next?’
Eventually you’ll probably reach the stage of moaning, whinging and swearing at b@st@rd MS. That is healthy too.
What I would expect to happen next for you is that you should be assigned an MS nurse. Treated kindly, they are generally wonderful. The MS nurse should be able to help you to understand the diagnosis, guide you through treatment options, get you referred to other departments as necessary (physiotherapy, maybe bowel and bladder, it all depends on what you need).
Have a look through the material on the About MS tab at the top of this page. That will give you some more background knowledge. I would assume that you’ll be given a small choice of the available disease modifying drugs (DMDs). So you can familiarise yourself with these, methods of taking, effectiveness and potential side effects, have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid
Meanwhile treat yourself kindly, try not to panic, feel free to come to the forum for help, advice, moral support, or just understanding.
I am 31 and was diagnosed with RRMS on 5th June 2018. Yes, it does give you a totally different look on life but how I see is that even the healthiest of people don’t know what is round the corner. Try not to overthink things and take each day at a time.
We are fortunate that there are many DMDs now available for us.
I have a son (14) and daughter (5). It is scary to think ‘what if’ but what if you are okay and just have the odd blip here and there? Stay positive - it’s just another chapter and you have all of us here to chat to.
Never feel alone x