I was diagnosed with rrms almost 4 years ago now and it has been described as rapidly evolving or highly active.
What I wanted to find out is how can I change my neuro consultant and hospital? I want to go on Lemtrada in the next few months but although my neuro originally said my choice of dmd is my decision now that I have decided what I want to do he is very dismissive and just trying to railroad me into a drug that I don’t want and I feel I shouldn’t even be having at all!
I have done a lot of research into it and that’s what I feel I need to have. I’m willing to travel (in the uk) and looking for the best centre to have this treatment where hopefully they will have experience of it possibly from when they did the trials etc.
I would appreciate any advice about changing consultant or where’s the best place to have lemtrada.
Is your current neuro trying to get you to go on Gilenya which is for highly active MS? Lemtrada is for active MS. is your current neurologist an MS neurologist ?
You are entitled to get a second opinion and to do this you need to see your GP and express your thoughts and concerns to them. They will write to the MS neurologist you would prefer to see for your second opinion. I did this but my second opinion appointment took a few months to come through.
I don’t know about the best place/centre to have Lemtrada but possibly one of the London hospitals or Cambridge (Addenbrooks hospital may be, think the MS neurologist is Dr A. Coles but I don’t know anything about him though).
When they give you a choice, it is generally (although not always) when you are going on one of the older first-line DMDs which are all much of a muchness in terms both of efficacy and of risk profile. But when you have highly active RRMS, it’s a bit of a different game. It seems to me that this is the level at which the neurologist’s expert openion on how your MS is behaving, and what is the best balance of risks and benefits available to keep you well, becomes particularly important.
But I do firmly believe that the drug that will work best for you will tend (all other things being even roughly equal) to be the one that you want to be on. So if they are trying to start you on one drug when you want to be on another, you need to get them to explain their reasoning so that you understand where they are coming from, even if you don’t agree. If they have not yet done this to your satisfaction, then I think if should be a priority for you. If you don’t understand whey they are recommending what they are recommending, then there is a chance that your new opinion neuro will recommend the same as the current one, and for the same reasons, and you’ll be no further forward.
Thanks for your replies. I’ve just got back from seeing my gp and she will request a transfer of care for me dependant on funding. I asked her what that meant as it’s all nhs anyway but she said she didn’t know! Great help that!
My neurologist wants me to go back on tysabri which I was on for 2 years previously and stopped because I got pregnant but I didnt want to stay on it anyway due to being jc positive. So saw this as my chance to change dmd to which he did suggest lemtrada but since Ive been relapsing alot in pregnancy he just wants be back on tysabri before the baby is even born.
Many hospitals won’t even let you stay on tysabri if you are jc positive and I myself just don’t want to take the risk.
I hope it wont take months for an appointment to come through as I feel I’ll need to be on lemtrada asap after thd baby is born in November before I get a whole bunch of relapses as I did months after thd birth of my last baby.