Hi all, im new here, im 28, a single mum of 1 and was diagnosed with MS 3 weeks ago. I was having problems with my balance, vision and coordination for a few weeks when my gp referred me to the hospital as she had noticed i also had nystagmus (shaky/jerky eyes apparently!) so anyway after a quick examination, the hospital sent me home saying that they thought i had an inner ear infection. After another week my symptoms were getting worse so i went to a&e refusing to leave until they had looked into it further. They kept me in hospital and did a lumbar puncture (which they never discussed results with me) and 2 CT scans which showed nothing unusual but they still wanted to keep me in because the neurology consultant was now concerned about my worsening balance. I kind of had an idea at this point that they had a hunch on what it could be but were waiting for confirmation before mentioning it to me, they booked me in for an MRI scan that would be 2 days later but they still wanted to keep me as an inpatient as i could get my scan done quicker than i would as an outpatient. Anyway, i went down for my scan and came back to the ward, 20 minutes later a doctor came to see me, she said that she already had results from my scan and they had found something. She went on to talk about 3 areas around my brain that had lesions, 1 area that was inflamed and all these other things that i didnt understand, at this point i was still oblivious to what she was trying to tell me until she said “do you know anything about multiple sclerosis?” with those words i crumbled! 1 because the thought of it being this never ever crossed my mind before those words came out of her mouth, and 2 because i did know about MS and it absolutely horrified me!! I have worked in nursing homes and hospitals for the last 10 years and had taken care of many people with MS who werent able to take care of themselves. Obviously with this being the only side of MS i had seen, people who cannot walk and rely on others to care for them, i was mortified! They gave me steroids IV for 3 days after my diagnosis to hopefully eleviate the swelling from the most recent episode and get rid of my symptoms and sent me home. I have an appointment tuesday coming with my neurologist and im petrified about the fact that my symptoms have not gone away! my vision is a little better but thats about it, surely the steroids should of had a better effect? im too scared to research anything, as much as it could put my mind at rest to know its normal for me to still have these symptoms, the fear of finding out that its not is taking over! im literally devastated by this diagnosis, my daughter is only 5 and i am so scared that i wont be able to be the mum that she needs in the future, im crying all the time and as much as i appreciate it im sick of hearing people tell me i have to stay positive! what is there to be positive about? even if im fighting fit in 10/15/20 years im still going to be spending the rest of my life waiting to have another episode and deteriorate. Maybe in the future i might be able to be positive but right now i feel like im grieving but i dont know what im grieving for! Anyway im sorry for ranting on and on, i just wanted to introduce myself kimberley
(((Hugs))) Kimberley, you’ve had a shock and there’s a lot for you to get your head round.You’re grieving for the life you had pre-dx and for the dreams that you may not now be able to fulfil. It is a perfectly normal reaction.
I can’t comment on whether the steroids should have done more than they have but you may find answers on the main part of the MS society websiate. You will also find lots more useful information there, when you feel ready to look at it.
How did you get on at your appointment yesterday? Have you been offered any DMDs (disease modifying drugs)? If you are eligible, I would seriously consider going onto one as they have been proven to reduce the frequency and lessen the impact of relapses.
Remember that the people with MS that you have cares for are only a subset of all people with MS. It is a very individual disease, it affects everyone differently. Plenty of people on this forum work, raise families, travel and generally enjoy life despite having MS. I’ve been pondering your comment about being scared you won’t be able to be the mum your daughter needs and I apologise if this doesn’t come out right. What your daughter needs most of all is to grow up knowing that you love her and you will still be able to do that. You will deal with the rest as it happens, with help from others if necessary. No-one knows what is round the corner and MS is not a death sentence. It isn’t a picnic, don’t get me wrong, but I can think of s couple of things I’d like even less.
Well-meaning comments about staying positive are not what you need; you need to give yourself space to start to come to terms with your diagnosis. It will take time and you may well find that some days are better than others: I still have occasional “down days” about it. Be kind to yourself and take care.