MS Nurses and results

Everyday living
1

Hi all

Sorry this is most probably 2 subjects in one.

I just wanted a bit of advise, I had an MRI 7-8 weeks ago as I finally got my consultant to agree I should go onto a DMT, I have had at least 3 relapses since I was diagonals in Feb 2017 (well 3 lots of steroids), but wouldn’t consider it prior, but I had my notes reviewed through best doctors, which agreed with myself I fitted the criteria. Sorry I want to hit this hard and fast.

I have heard nothing back from my consultant or the nurses since the MRI, I was told originally the results would be back 4-6 weeks. Still nothing, consultant wanted MRI to see how active it was for what drug he would prescribe (another question should he suggest more than 1 and I chose or can he just say it’s this or nothing?).

I don’t feel I can talk to my nurses as it’s a phone line and they would call back but could take 4 days for them to reply (normally longer, for me - might be paranoid), When I was first diagnosed I was quite worried when my arm went cold and swelled etc… they said not the MS see my local doctor, my doctor just looked at it spoke to me took my pulse and said of course it’s the MS.

I don’t want to make trouble but all I ever got when I did see the consultant is I was happy and healthy and it’s just feelings / sensations.

What do I do now? should I chase the nurses again? am I doing the right thing?

Sorry bit feed up (might be the heat!! as my body doesn’t like it!)

Thanks for listening and any advise.

2

Hi Shona

It sounds like you’ve been a bit abandoned by the MS professionals. That’s not a very nice feeling.

Why don’t you try phoning your neurologists secretary and ask him/her when you’ll see your neurologist again to discuss exactly which DMD you should go onto.

Generally people do get an option as to which DMD they go onto. Even if your neurologist favours one over another, you’d normally get some choice.

Have a look at MS Decisions aid | MS Trust The various drugs are split up into groups as to how ‘active’ your MS is. The more active, the higher both the expected relapse reduction rate, but also the potential for side effects. It will help you to have an idea about which drug you’d be happiest trying, ie the potential risk versus the possible reward.

The neurologists can see more from your MRI as to how severe they consider your MS to be, it’s not all about relapses, it’s the number, size and location of lesions (I believe).

If your neurologist thinks you’re in a lower severity group, you’d probably be offered the beta interferons, Copaxone, Tecfidera and maybe Aubagio. There has been some evidence that Tecfidera works best when it’s the first DMD taken, so it’s worth keeping that in mind (see Multiple Sclerosis Research: #NeuroSpeak: DMF as a second-line agent or not ) I’m mentioning these as the most likely options to be offered.

If you want to aim the bigger guns at the MS, and it’s seen by the neurologist as being ‘active’, you’d probably be looking at Lemtrada. That’s got the very best average relapse reduction rate, but has the risk of some fairly serious side effects. Personally, I’d probably take the risk if I were currently fit and well. But it’s something that’s very much a personal decision. You need to have as much information as you can get prior to having that discussion with the neurologist. You could have a look at https://shift.ms/ Their forum has a lot of members who have taken Lemtrada, so you’d get personal views as to what the treatment is like.

In terms of you MS nurses, it doesn’t sound ideal at all. Chances are they have way too many patients/clients to see and insufficient time. That’s a bit of a pattern across the country. When you do get to see or speak to one, maybe you could ask if there’s an email address to which you could address questions and queries. (That’s what I do with my MS nurse and she’s pretty good at replying.)

I don’t think after 7 or 8 weeks that you’re being in any way impatient. You have had several relapses, and while they might be more sensory than motor, you want to stay as disability free as possible. And the way to do that is to prevent any more serious relapses.

Best of luck.

Sue

3

Thanks Sue

I am shift MS so have been looking through that too

Thanks for all your advise I will try that with the nurses, and see if I can find secretary, he always asks me to go via the nurses.

Thanks again

shona

4

You need to follow this up. Are the medics becoming more reluctant to actually prescribe DMD’s - recently there seem to have been quite a few posts from people who are not getting DMDs