Hello friends , sorry I have not been on for a while …on the 10/10 I met with consultant who said almost certain I have ms , bulging Ang crumbling disc s and a straight spine ( neck ) due to spasm BUT on a positive he was sure I didn’t have m.n.d or tumor ! I really don’t know how I feel … I’m not dying , I’m going to see my children grow up … It’s just going to be hard , I’m the same as yesterday… Last week … Last month it’s just that now it has a name … Yes I get bothered at the thought of being this shattered and in pain ( which I wish would go away ) but I just feel relief really … No one is going to lock me up for saying I can feel bugs running under my skin . This is now normal … My normal , x
Hi I’m new here and hoping I don’t belong really! It is a relief to be believed though I know - I felt the same way when my RA was diagnosed. Now in a new limbo with sensations of crawling insects, wet legs and numbness in my ankles and calves that no one can explain . These have been around for four months now and I would be relieved if I was sent to a neurologist and had scans but with me its all put down to my RA or drug damage - neither of which I believe it is. So I’m starting on here to see if others recognise the crawling insects and wet legs perhaps. Good luck with being official - the self management courses for those with long term conditions are meant to be very good - I start one next week.
Hi, sorry to hear your news. However, I was very impressed by the last line: that you’re accepting that this is your new ‘normal’. Good for you! Be always kind and loving toward yourself and I wish you all the best
Hi Little Ginger…so sorry about your dx. You sound as if you have the right attitude and won’t let this thing rule your life…good for you!
Just make sure you take any help/support offered to you, and be kind to yourself.
Thank you all very much , it’s nice to have a place where people understand , I have no family if my own but my partners family and he are a great support even if they don’t really understand , I think telling people will be the hardest … The children took it very well age 7,11 they obv knew mummy was unwell and have been to hospital lots for tests … I felt it important they they knew ( so that on bad days /weeks/months they could understand why mum was sleeping or wobbly or just plain crazy ( silly words bad speach etc ) so this is what I told them … Mummy is not going to get better and it may come and go … My brain is like a computer that tells my body what to do and how to behave but because I’m ill they messages rant right which makes mummy wobbly etc … Mummy is not going to die , I have doctors and nurses that are going to give me Meds to help . They have been fantastic I didn’t want to give them a label as for sure the 11 yr old would go look at doc google , obv the older 2 age 17/18 got told everything … Was that the right thing to do ???
Hi polar bear I’m currently taking amitriptyline for the pain it helps a little
Being a mum myself, I think I’d have said the same in your position. In fact, I’ve been quite open with my almost 5 yr old. Though I’ve no diagnosis yet, she knows I’m often tired and dizzy and sometimes say words wrong especially in the evening when I’m reading her bedtime story, so I’ve said that my body isn’t quite working properly and the doctor is trying to find out why. Children can be surprisingly understanding and compassionate sometimes. So did you do the right thing? Well, does it feel right to you?