Hi everyone, Hope you’re all as well as can be expected. Well on Tuesday I got the diagnosis of a lupus like condition and the rheumatologist is writing a letter to the gp to start me on a treatment plan. And yesterday I also got the firm diagnosis of ms as well. I’ve got rrms which I had already known as it was previously mentioned and now I’ve got the option of DMD’s. I’ve got the choice of interferons (got the choice of 4- avonex, rebif, copoxane, betaferon) or also got the choice of tysabri. I’m pretty sure I’m going for tysabri - the consultant is arranging when the JC virus test is happening - then I’m going to get that and see what the results show. I’m pretty sure I’m going for the tysabri even if the results are positive but worth getting the test done. So now the next stage is that both consultants are writing to the gp - the rheumatologist will write with the prescription and then I will start that when the gp has received it - have to have my eyes checked every year as it has side effects that can damage the eye. So now my next step is to phone the dvla this morning and my car insurance company. Thing that’s the only things I need to do (don’t have CIC). Is there anything else I need to remember to do? Thanks x
Hi Karina, well it’s always hard to welcome someone to the ‘MS gang’… not a gang you would have chosen eh? But perhaps there’s a sense of relief too… sometimes it’s good to have a name for all the symptoms!
I can’t advise you on DMD’s as I have PPMS (and we don’t use DMD’s)… but wanted to say hi and hope you are doing ok with the dx. Don’t be surprised if your emotions are all over the place for a while… it’s normal.
Also I know you’ve been using the forum for some time… so I won’t give you the usual ‘newbie’ info!
Take care hon… lots of TLC, rest… and keep cool as poss!
Thanks pat - I feel ok with it as I was given the probable diagnosis previously so think I kind of got my head round it. Just trying to decide on the DMD’S but I think tysabri is the way to go as I know that there’s some rave reviews on here about it
Sorry i’m late to this, I am so pleased for you that you finally have some definite answers, you have had such a long wait. Great news about the choice of treatments too, Tysabri is meant to be the ‘rolls-royce’ of treatments, would you have to go to St Georges for that? I hope you are still feeling positive about it all? However even though you knew it was coming, our minds like to play tricks on us, so you know where I am if you need a shoulder.
Hope you have a great day tommorrow
Hi Laura, I’d go to charing cross once a month for an infusion. My consultant is organising for me to have the JC virus test which is only once a month because it gets sent off to a lab in Denmark- as soon as that’s done and the results are back them I’m all set to start. I’ve decided that whether the JC virus test is positive or negative I’m starting the tysabri anyway and seeing how I get on with it and its the one that will least interfere with my life and work etc. Got the ms nurse coming to the house on Friday next week to talk through everything and the drugs etc. I think because I was originally given the diagnosis more than a year ago and then they put the diagnosis on hold as such because there was other symptoms then it sunk in then. I knew that the lupus and ms diagnosis were coming - it’s just trust my luck that I have them both! Ha! But heyho what doesn’t kill me will continue to make me stronger! Thanks Laura you remembered! Yep tomorrow I will be 33- although feeling much older at the moment! I have a horrible feeling I missed yours - was it yesterday?! If so I’m sooooo sorry I forgot - naughty me!
Charing cross is a bit of a mission isn’t it? Can they not do it anywhere closer? Heard from my nurse that they are trying to get it at Ashford by the end of this year, might be a bit closer?
Hope the visit from the nurse goes well for you (are you having a local nurse or one from your hospital?) and she can offer you some advice, although you probably know more than most newly dx from having so many tests along the way! It is a blow having not 1 but 2 auto-immune conditions, like you said what doesn’t kill you! You are very brave.
It was mine yesterday 29 going on 700! I will let you off this once…you had more important things to think about! Have fun tomorrow and hope you feel 21 again very soon! x
I’m seeing my nurse on Friday next week so I’ll ask her about ashford and when it looks set to start. Charing cross isn’t too bad to drive to - takes about 30 minutes with no traffic. The ms nurse is Jane Goldberg - she’s the one that covers this area - she might be yours. I remember my 29th - no ms or lupus then! Care free- well I haven’t been care free for the past 7 years but that’s no medically related that’s just been my life hurdles!! Happy belated birthday - so sorry I missed it will catch up for that drink soon - got some time off work in August so will sort something out then?
Yes Jane was my original nurse, switched care now to Maggie as she deals with DMD patients. They are both nice, so I’m sure you will be well looked after! It was Jane who told me they are trying to get tysabri at Ashford. I don’t think I’ve ever had a hurdle free birthday, maybe when I was about 5! Life doesn’t give you more than you can handle, so by that reasoning you must be superwoman!! Yes drinks sound good, give me a text when you get some time. Have a fab weekend. Laura x