I went to see the neorologist yesterday for the results of an MRI and he told me I have MS. To be honest the rest of the consultation passed in a blur and I am sure I didn’t find out the things I should have. Does anyone have any advice for me? Any help or suggestions about MS would be so gratefully received.
Hi Marple I was diagnosed Thursday.just try stay positive. I’ve put a post up asking same thing so might be worth a look… Keep smiling scott
1 Like
Hi Scott, thank you so much for your message. Sorry to hear your news. Timing sucks! I’ll try to keep smiling if you will. I’ll check out your post.
Yours
Louisa
Hi Louisa, I put a couple of comments on Scott’s post yesterday. I was only diagnosed 3 months ago but have already realized that it is different for everyone and you will deal with it in your own way. It’s a crap disease but being positive and demanding all the help you are entitled to is (in my opinion) the way to go. I wish you all the best for the future and remember there are people going through the same as you, so you are not alone xx
1 Like
Hi Marple and welcome to the club no-one wants to be in. I was diagnosed back in June, my neuro basically told me I had MS then sent me on my way. I knew nothing, I didn’t even have an MS nurse for nearly two months and it was only due to advice I received on this forum that I began to get any direction and support. Everyone is different in how they react to diagnosis, for me its been a roller coaster (that is finally settling down) of emotion, from a high of finally getting a diagnosis after nearly 3 years in limbo to a total train crash as I go through grieving for what I no longer have and accepting this arse of a disease (I am still going through the process of accepting it). And now researching the drugs I can go on to slow down progression. As I gain understanding of how the disease affects me, it gets easier. Its been rough but I can now see light in what seemed like an eternal dark tunnel, there is plenty to still be grateful for. I hope your path isn’t too bumpy, but if it does get rough always come on this forum if you want an empathetic ear. Make sure you get an MS nurse, they are angels in disguise :), in the meantime, be kind to yourself.
Have you been told what form of MS you have?
Never feel alone, and even if you ever feel no-one understands your MS in your life, someone on here will.
Nikki
1 Like
Thank you for the replies here and to others. This message board has already been a huge help. Nearly 1 week on and I am still scared and tearful, but I am now starting to make a list of questions for my neurologist, have identified a local group and have started to keep a diary to keep me sane! (Haven’t written a diary since I was a teenager! ).
Thank you to everyone for the advice and reassurance. I wish you all a wonderful Christmas.
Louisa
1 Like
hi marple
i am so grateful that i had a fantastic neuro, as soon as he was able to diagnose ms he passed me on to an ms specialist consultant.
postcode lottery strikes again!
why not phone the neuros secretary and ask for another appointment?
explain that you have been left with nothing but a label for your symptoms and want to know what sort of ms you have (rrms - relapsing remitting) or ppms (primary progressive). ask about an ms nurse too.
meanwhile see your GP for symptom relief and try to exercise when possible.
pilates is a great form of exercise and is the basis for most physio.
if you want more info on the different types of ms, the ms society does excellent booklets and you can send for them from this website.
hope you get some answers
carole x
2 Likes
Hi all. I’m another new member, diagnosed with mild RRMS on the 1st December. I’ve had sensory symptoms for 3 years now so feel like I’m moving out of limbo into somewhere I’ve been afraid of all this time.
Louisa it sounds like you’re doing well at facing things. I’ve been afraid to even come on here as I thought it would all be too depressing but it’s nice to virtually meet other people at the same stage of coming to terms with it all.
Happy new year anyway to everyone on here. I feel like for 2016 I want to make a bucket list of things that I’ve always wanted to do but never got round to, and that I would be pissed off with myself for not doing while I still can if I’m going to end up disabled. Seizing the day and all that.
1 Like
It was thanks to this site and forum that I learnt enough to arm me when I went in to see My Neuro. I asked about DMT treatments and was rewarded by her referring me to DMT guys. To be honest, my feeling is that had I not asked she would have sent me on my way with a “let’s see how you feel in six months”. One thing I have learnt is you need to be pro active. I now have an MS nurse pulse referral letters. I was officially diagnosed mid December. I am also going to drop in on our local MS coffee morning just to see what I can gain from talking to other MS sufferers.
Hiya everyone,I am newly diagnosed as well. Just had my 2nd Tysabri infusion today so feel like things are moving along…2016 is going to be a great year for us all!! Terry x