Hi everyone just a quick message to say I had my appointment with my neurologist today. He has said I have rrms (very strange saying that). Im due to meet with the ms nurse who’s going to go through the injections. I asked him for a letter confirming the diagnosis so I could go part time in work and he did, there and then. So im now looking at it in black and white I have rrms. Scary biscuits. Thanks for all the support you guys have given me looks like im gonna be here for a while x
Hi Ruby I’m glad you finally have some answers. It’s strange when they confirm the diagnosis even though you suspected MS. Good luck with your treatments I’ve the nurse on Friday to go through them also. The consultant told me to have a look online at MSDecisions beforehand so I had some understanding of the treatments. Going part time will be beneficial for you. I’m looking to do that when I return to work as after my first episode I went back phased and then increased my hours back to full time but off now with Optic neuritis, so definitely going part time now. Take care Polly x
Hi Polly
Yes it is a relif in some ways, I had a look at MS Decisions and Im going to go for Rebif, I really hope it goes well. Not looking forward to the injections. I really hope they let me work 3 days a week, Ive not been employed for a year yet so Im not sure if I have any rights, also taking a drop in wages will be a struggle, but I have to say on mornings like this when Im so tired it would be great. Please let me know how you get on on Friday.x
Hi Ruby I will let you know how I get on, it will be the first time I meet the nurse face to face as I’ve only spoken to her over the phone. I’ve had look at the site aswell but will be good to speak to the nurse in more detail. Like you I’m not looking forward to the injections but if it’s going to help reduce relapses in the long run it will be worth it. Polly x
Hi Ruby, Good luck! I’m newly dx and had the letter at the weekend. I agree, it is weird seeing it in black and white. I need to decide a treatment for the 29/01 when I see the nurse. Do keep us posted L x
Hi Ruby Today went really well. The MS nurse was lovely and explained the differences between the treatments, she also gave me lots of MS booklets for me to read one was Working with MS and some were for my son to read as he has been asking lots of questions. I went in thinking I would start Avonex and came out deciding on Copaxone. So now just waiting for the meds to arrive which she said would take a couple of weeks then she will come out to show me how to do the injections. Hope all goes well when you see the nurse. Polly x
Im glad things went well Polly, your really lucky that the nurse comes out to you. I got a call today saying I will start Rebif on the 3rd of February I have to go in and go through everything and then practise injecting myself. I then need to go back on the wednesday and show her doing it myself. Bit scarey but I suppose it will become a way of life after a time.
Hi Ruby That’s good your starting treatment soon. I expected to go in and practice how to do it but nurse said no we come to your house and the meds will come directly to me at my home address so once I receive them I’ve to call and let her know. It is a bit scary but I’m sure after we do it like you say it will become a way of life. Polly x
Well please let me know how you get on. Good luck
Good luck for the 3rd I’m hoping my meds will come early Feb aswell Polly x
Welcome to the newly diagnosed club! I got my letter last week. I’m borderline between starting Copaxone and Gilenya as my MS has been aggressive (at least 3 relapses in 4 months with residual symptoms), so unfortunately I am going to have to wait a few months for the drugs while a get a referral to Oxford for them to make a decision (rather ironic to wait longer if they are worried about it being aggressive I think, but hey ho). I hope the drugs work well for you.
Hi Puddinglover I am sorry to hear of your diagonisis, My younger brother also has a more aggressive form of RRMS he has been taking Tysabri and it has really helped him. It does seem strange that they make you wait so long when they are calling it aggressive but I think this is normal. Im sure they have their reasons. Please let me know how you get on.