Hi, I was diagnosed with RRMS in March after two relapses within 6 months. I’m a bit disappointed with my neurologists attitude to DMTs. It was not mentioned until I brought the matter up. I was basically told to go away and they’d see me in a year. After I mentioned I was not happy with that course of ‘treatment’, I was given another appointment where it was suggested I wait for further relapses and disability before being offered treatment to stop further relapses and disability?? It was also mentioned how expensive these treatments are. I’m hoping the Ocrevus is licenced soon and I’m going to push to get on that. I’m currently suffering with vertigo and feel totally fed up with the lack of help I’m receiving. I’m considering getting a second neurologists opinion on treatments, has anyone any experience of how to go about doing this? A fed up and frustrated newbie. Angela
Bless you, this makes me feel very lucky as I was offered a dmt almost immediately. I think you should definitely seek another ‘opinion’
Do you see an ms nurse? Mine is good and explained all of the options that I met the criteria for
yes they are expensive - about £8k a year for mine I think
but so what? If you meet the criteria then there is no excuse
earlier you start the better the nurse told me. Don’t let it drop, phone and phone until your voice gets heard
as If it’s not bad enough being told you have MS. No support is poor
Is your neurologist an MS specialist? If not, I would suggest you find out if there is one either in your own hospital, or in a hospital somewhere near enough for you to travel to. Then ask for a referral to that specialist. You can check on consultants specialisms by searching through the hospitals website. Or if you’ve been given the contact details of an MS nurse, ask her/him.
Have a look at https://www.mstrust.org.uk/understanding-ms/diagnosing-ms/newly-diagnosed-multiple-sclerosis/disease-modifying-drugs This does seem to indicate that if you’ve been having relapses and are diagnosed with RRMS, that if you eat to take a DMD then you should be able to.
It says in one place that ‘There is increasing evidence that it is important to begin treating MS early so that you stay as healthy as possible in the longer term. This means starting DMDs soon after diagnosis.’
If you aren’t able to change to see a different doctor, perhaps you could write to the neurologist you have asking her/him to explain why you aren’t suitable for DMD treatment at the present time. Or, phone the neurologists secretary and ask if you can send an email that will be seen by the neuro.
Best of luck.
Thanks guys, I do feel totally unsupported. My neurologist is an MS specialist. All I keep getting is ‘you might not have a relapse for years’ I’ve been bed bound for the last week with vertigo. Going the hospital tomorrow for possible steroids if I can make it in.
I just looked at this again (saw Angela’s reply). I imagine that by ‘eat to take a DMD’, I actually meant ‘want’!!!
He sounds like a real old school neurologist. Can you find as many sources as you can from reputable sites which support early intervention with DMDs? Here’s one from the Barts Blog, I don’t think it comes right out and categorically states that early drug therapy is best, but it certainly suggests it. It’s from 2015, but I don’t think they’d have changed their minds: Multiple Sclerosis Research Or from the MS Society, the page on which they allow you to,download their booklet on DMDs says something about the ‘benefits of early treatment’: https://www.mssociety.org.uk/ms-resources/disease-modifying-therapies-booklet
As far as I’m aware, the general rule these days is to treat RRMS with DMDs early, to avoid as many relapses as possible, and limit the severity of those relapses. You may need to do a more thorough search to find out the treatment guidance as it relates to DMDs in early MS.
I’m going to the relapse clinic on Wednesday, to determine if this is a relapse or something else. I feel like I’m not even believed about my symptoms. It’s going to be tough but I’m getting myself to the clinic and I’m going to request another neurologist who is willing to consider a dmt. I work full time and had an active life, I’m not prepared to give up yet. And I’m going to get support even if I have to go through every neurologist in that hospital.