It's all coming back to me!

Everyday living
1

Hello board,

I have been reading, but not really comming for a few months now. To give you some background to me- I was dxd 11yrs ago with RRMS (I was 16) and after a hard, ill 2/3 yrs, my ms went very quiet and I didn’t have another relapse until this July. By which time, I’ve moved to Prague so had to deal with a relapse, drs, LP, steroids and everything here. The treatment I recieved was great and I don’t have any complaints about the hospital care but I didn’t like the neuro I was under so changed to another in the summer. She seemed nice and all was going well until I had another, very minor relapse in the middle of Nov. She had told me to go straight to her if I had even the shadow of a relapse, so I did.

But, here is the problem. All I had was very minor tingling in my left side for 2 days and then the right side of my face went a bit tingly too. She gave me a 6 day course of solu-medrol and I had another MRI scan last week. I do understand that what she did was standard practice for neuros etc, but the steroids made me feel SOOOO ill for the 6 days I was on them (I kept working) and SOOOO MUCH worse when I stopped without a tablet taper that I REALLY would just have prefered to have the relapse (which I only had for about 10 days and was starting to get better on its own, as I told her).

So, my question is, that for someone with, so far, a very mild form of MS, if I didn’t treat every minor symptom like this and only saw the dr for BIG relapses and 6 monthly check-ups (or how ever often she wants to see me), would it be so bad?

The big problem I had with the last neuro was that she wanted me to start dmds straight away, but I disagreed, very strongly.

I know many people take them and they work for many, which is great and I don’t have any problem with dmds, I just don’t feel they would be right for me, at this stage. I may re-consider this decision in the furture, but at the moment, my gut instinct is just a very loud no!

Is anyone else out there going it alone and without dmds?

I also have an appointment with the neuro on Tuesday (after the MRI last week) and am slightly concerned that she’ll tell me that I have activity or something and I won’t understand (plus it’ll all be through a Czech friend as my Czech isn’t good enough to deal with this yet!), so could anybody point me in the direction of a factsheet on activity/legions on the brain so I can study it before and have some idea or what she’s going to tell me!

Phew, if you’ve read this far, well done! Sorry this didn’t make much sense but thanks for reading!

Lion

2

That first sentence should say, I have been reading, but not really comenting for a few months now.

Flipping typos!!! I’ve got no excuse, sorry!

3

hi lion

i remember you from when i first came on this site - 2007

i can’t give you any advice because i’ve been on copaxone for 4 years but i hope you get more and better informed replies.

carole x

4

hiya

i have had ms for 7 years. never been offered dmds. for 6 months have been struggling with mega relapse-all of right side inc speech affected. dr phoned me on fri evening to give main points of mri-done 3 weeks ago but was told no results til jan 14th. fortunately i trust gp totally and he found out. good news is there was no brain tumour or stroke-didnt even think that was being considered! its ‘just’ ms. that was said to me in context cos over 15 years we understand each other. gp knows i am a no nonsense kind of woman!

2 months ago when i did see neuro for 20 mins he mentioned tysabri. its not an option for me-have discussed with my family. so,meantime i continue to speak funny,struggle to make myself understood,use peristeen twice weekly and be in pain which the edge is taken of by amitriptyline. i have also been practising meditation for over 2 years-helps enourmously.

i believe that that the neuro and i need each other-he has the theory/knowledge but i have the body! i think that no-one knows the answers-despite desperately trying to find out-so i am happy to be guided by what feels right for me. the body is packing up but the mind is stronger than its ever been.

just because i dont conform to the majority but that doesnt make me wrong i believe its right for me. i am prepared to live with the consequences of my decsions. and everyone should have their right to choose.

ellie x

5

Hello Lion

It is very difficult to give a straight answer as only you can make this decision. Also everyone’s MS is soooo … different. I will however, tell you about my MS ‘experience’.

When I was diagnosed with RRMS (over 20 years ago), I felt that it was quite ‘bearable’ and ‘benign…ish’ (if that makes sense) and so I rejected/was very anti any medication that was offered. I ‘soldiered’ on for about 20 years - and focused on other stuff. I"m not saying it was easy, and as you said, I didn’t go to the neuro every time I had a relapse or a new symptom. I can’t say that IF I had of taken medication if would have delayed/stopped symptoms, - who knows? But I suppose what I’m trying to say is that I don’t regret or think it would have made any difference to how I am now - SPMS. So my advice is to trust gut instinct but be prepared to take what’s on offer if and when you need to. Also I suppose, advancements have been made and the medications offered now are different/better?

Hope this has helped - stay well.

6

I am totally with Ellie and anon, i was diagnosed 21 year ago,never taken steroids,never taken a dmd,was never offerd one anyway,and like anon i am now spms,after 13 years of rrms,you know your own MS and your own body,i have had a few very severe relapses too,where i have been in bed for months,but always managed them at home, refusing to go in hospital,there wasnt much point because i would have refused steroids,i dint see a neuro until the last few years,i go once a year,because my gp thinks i should stay in the ‘system’ i feel i waste mine and the neuros time though.

7

Thanks for all your responses. From my experience, especially the first neuro who looked at me like I’m a COMPLETE idiot for not being on dmds since dxd, I feel like the system is geared up towards just doling out drugs almost regardless of the patients feelings! This could just be my feeling of course and I don’t mean to offend anybody who takes dmds, as you have all said, everybodies different, but I do feel a lot better for hearing your comments. Thank you.

9

The problem with relapses (or one of them) is that you never know if the next one is going to be as easy to deal with as a bit of tingling or a humdinger that leaves you totally immobile and doubly incontinent.

That is why I cose to take a DMD, first Rebif and now Tysabri. And if I have a disabling relapse then I would take steroids to speed up the recovery. I don’t want to play chicken with MS, if there is a chance of avoiding even one disabling relapse then it’s a no brainer as far as I’m concerned. Anyone who has never experienced a doozy that has knocked them off their feet for weeks on end or worse wouldn’t understand that I suppose.

Each to their own I say and I wish you well with your choice, but I have never regretted mine.

10

Whether or not to take DMDs is a personal choice, but I honestly do not understand why someone would refuse them if they were offered. It’s not like the injectable DMDs make anything better; they’re preventative, not curative. So doesn’t waiting until we “need them” basically mean waiting until we’re already disabled, at which point, well, isn’t it rather too late?

Actually, there’s a bit in the documentary Here’s Johnnie, about the artist with MS, when after years of refusing DMDs, trying to go it alone and trying all sorts of alternative cures, he finally asks for DMDs only to be told exactly that: “Sorry. It’s too late.”

My MS was very mild for many years. From 1998 to 2010, my EDSS was at most 1/1.5 and I was still successfully competing in taekwondo for GB. That was in part due to Copaxone, which kept me relapse free for 3.5 years. (No) Thanks to timing issues, I was then between DMDs for 15 months. In that time, my EDSS went up to 6, my repeat prescriptions went from one to seven and I bought my first walking stick and my first wheelchair. Thankfully, my MS has gone back to being very quiet since I started Rebif in 2011 and I have had no more relapses. But if I could go back in time, my first port of call would be to the neuro’s office on 24th April 2010 when/where I would refuse to leave until he signed a prescription for Rebif.

Hindsight’s a wonderful, but pretty useless, thing. Especially when we’re talking about something take you from an EDSS of 1.5 to 6 in a single, potentially preventable, relapse.

Re doling out DMDs: it certainly doesn’t happen in the UK, more’s the pity - the UK has an embarrassingly low % of RRMSers on DMDs. Hopefully the revisions to the NICE guidelines will change that because there is plenty of evidence that DMDs significantly reduce the chance of people with CIS developing MS and that starting people with RRMS on DMDs within the first couple of years significantly reduces disability; never mind the benefits of reducing relapse rates, reducing the severity of relapses, slowing progression and prolonging life span. But as Val said, the NHS is not exactly cash rich, so I’ll believe it when I see it.

11

MS is not quite the same for any two of us - but with hindsight, I really do wish that I had taken up the offer of DMDs when it first came up. It would have probably saved me two or three relatively minor relapses, but also the effects left by those relapses (like the need for two sticks and an FES to walk anywhere more than a few paces). My decision (or rather indecision), and I think that it has cost me a lot.

Geoff

12

Hi Lion,

Steroids will only shorten the length of a relapse but not alter the outcome and as you say can be fairly rugged in their side effects. Personally I only take steroids if a relapse is seriously disabling. If I can’t walk at all, or lose a significant proportion of my vision etc. Everyone will have different parameters for taking steroids but in my experience they don’t do much for purely sensory relapses anyway so I tend to save them for the big guns only. Also bear in mind that steroids can lose their effectiveness over time so I like to save them for something major.

As far as DMDs go it is well recognised that the earlier they are started in the disease course the more effective they are. I am always amazed at the number of people in the UK (I am from Australia) who aren’t on them early. Over here it is standard practice to start people on them straight away and in many cases even when a person presents with Clinically Isolated Syndrome as it has been proven that DMDs can prevent CSI from turning into full blown MS or at least delay its onset.

The fewer relapses one has and the less damage that is accrued has to be a good thing. I don’t really understand the idea of waiting until things get bad before taking them. It seems a bit like shutting the stable door after the horse has bolted. DMDs are designed to prevent damage occurring, not to fix damage after the event although some of the newer ones are showing signs of being able to do this too.

Personally, preventing a whammy of a relapse with all the related and often permanent deficits that can come with that seems pretty desirable to me. If it was me and I was being offered DMDs I would grab the opportunity with both hands. Did you know that a recent study has shown that people on DMDs live longer than people with MS who aren’t on DMDs?

As for reputable information about lesions, damage, DMDs etc have an explore of this site and try googling “activity and lesions in multiple sclerosis”.

Cheers,

Belinda