Decided against taking DMD'S.......thoughts?

New diagnosis and before diagnosis
1

Morning one and all!

Hope you are good. So not sure if many of u knw my history but I was diagnosed with RRMS on 6th May. I have had 2 relapses in 8 months. The first one affected me from the waist down, had loss of sensation and pins and needles but never lost any strength at all thank god. the second one I am still going through. I have optic neuritis, it is taking its sweet time to heal but is slowly getting there. So my neuro suggested Copaxone for me but i have made the decision to not take it and just work on getting a healthy lifestyle- diet,exercise, supplements. I am starting meditation too so that I can learn to relax.

Was just wondering you’re thoughts on this.

x

2

This is kind of where I’m at at the moment. I was diagnosed in April and have had two relapses, both of which I have recovered from fully. I just get occasional cramps/spasms in my legs and feet now. My issue is, I haven’t really had enough relapses to establish a ‘pattern’ so if I start DMDs straightaway how will I have any clue if they’re doing any good? I might just be having a relapse-free period anyway! My next neuro appointment is 16th July and that’s just the first stage (I have been private to this point - this is my first NHS appointment), so I have a while to think things through anyway. I’ve just started some dietary changes - nothing major, but I’m a poor eater and always struggle to just get in my five a day! At the end of the day, there’s nothing to stop us changing our minds later so it’s got to be worth a try to start with!

3

your scenario seems to be very similiar to me except im undiagnosed. Had numbness up to my waist but no loss of strength, and now the eyes arent the same and my balance is slightly effected. Im taking the same approach, healthy diet and vitamins, excercise seems to have the best effect, i run everyday, it makes you feel better though its a lot harder now with symptoms.

I think that your doing whats right for you. At the end of the day your taking an approach to dealing with this disease and trying to heal, if you never tried you’d always wonder and that would drive you mental. Who knows maybe it’ll be drugs one day for me, but not until ive exhausted other avenues

4

Hi Beccy,

I’m sure it will be regarded by some as a controversial decision; however, it’s your decision to make.

There is no such thing as “doing it wrong”, if you’ve had access to all the information, and that’s the decision you have come to. It’s your body, and your choice. You are the one that has to be happy with it - not everybody else!

Others may have had quite different perceptions and priorities, that led them to a different choice. It’s not “one size fits all”, and never can be in medicine - or life generally.

As you will probably gather, I’m someone who’s said no as well.

Then again, my situation was rather different to yours. I certainly hadn’t had two relapses in eight months - which is rather a lot. I’d only just about had two in two years (one of which was fairly trivial) which meant I was only a borderline qualifier for DMDs.

I wouldn’t have been denied them if I’d wanted - my neuro left it up to me. But when I announced my decision, he said it’s what he’d have done too, and didn’t try to talk me out of it - which I’d thought he would!

Like yours, he did say he’d be talking to me again if he thought we’d made a wrong decision, but so far, so good. That’s all I can say.

It’s been over a year now, and I’m as pleased as I can be with my decision, because nothing awful has happened. I accept that, statistically, I probably will have further relapses eventually (unless I’ve already turned Secondary Progressive, that is), but I’ve already made up my mind not to beat myself up if/when that happens.

There will be no point looking back with regret, because I’ll never be able to prove they wouldn’t still have happened if I’d taken DMDs.

It’s not as simple or straightforward as thinking: “Yep, I definitely caused it!”, because we can just never know.

So, I just take each day as it comes, hope for the best, hope I’ll deal with the worst if it happens.

Of course, the more time passes that I still don’t have a relapse, the happier I am that I made the right call on the DMDs.

Tina

5

As others have said its your ms and your decision.

If you are happy that, with all the info you have available to you your choice is not to take them …then its the right choice for you.

Pip

6

Your decision to make, Becky.

You asked for personal persectives, so here’s mine. I wanted to get started on DMDs (Avonex) before anything too bad happened, my MS was pretty lively from the start, and the evidence for how well DMDs worked encouraged me to not hang about. 12 years on, most bits of me still work tolerably well (although I need a stick for walking any distance, and one eye has a small amount of permanent damage.) Maybe things would be no worse if I had not gone down the drug route. I will never know. But I have always wanted to give myself the best chance. For me, that meant taking whatever drug treatments I was offered given the way my MS was behaving. Fot 10 years, that was Avonex and it worked pretty well. Then I had a bit of a rough time and switched to Tysabri. Fingers crossed, I’m doing very well on it.

Off to get a routine MRI later this afternoon, so we’ll have to see whether the pictures confirm what I feel - I had better get moving, in fact…

Alison

x

7

Wow thanks for all your comments.

Really interesting to hear everyone’s thoughts. Yea you are all right it is my decision and at the moment I think its right for me. If i end up taking anything in the future it will be the controversial LDN. I am almost qualified as a nutritionist so my diet is pretty much on point, now need to get my exercise sorted. I would just love my optic neuritis to bugger off now. 6 weeks almost and altho its come on since the beginnin its still not great! I really want it to go awayyyyy.

Thanks so much for your replies xx

8

Hi Beccy, I can understand your thoughts on not starting on the drugs for ms, I was dx in november 2011, I have always been anti taking drugs even pain killers for headaches!! mainly because I’m so allergy to so many things ( food additives) and lots of different drugs have really bad side affects for me and also I would rather take the more natural way, but when I was asked which ms drugs would I like to start taking I really didn’t want to take any but I started look what side affects which one had, with injections there seemed to be less side affects than tablets and in January I started on Copaxone injections and 5 months later I haven’t had any side affects all but I take loads of supplements follow a strict diet from a book about the naturally way to cope with ms,I do lots of different execises for my balance which really help me, I know lots of people think following a strict diet and supplements are a waste of money,but I will do anything to battle ms, so for me its worth it.

all the best whatever you decid to do

Sue

9

Hey Becky - please think long and hard about this one. The research and evidence is out there forDMDs. I grabbed the opportunity with both hands didn’t hesitate. Anything that can slow this bloody disease and reduce relapses is all good in my book. So ok it’s not pleasant injecting a “foreign chemical” into your body. But it’s got to be positive in the fight Good luck in whatever you decide Hugs Min xx

10

Thanks guys.

I have taken all your views onboard but at this moment in time I am not taking any dmd’s although there is a chance i am going to start LDN as i have heard good things about it.

XX

11

Beccy, I think all I would suggest is, keep an open mind and never say never. You feel that DMDs are not right for you at the moment, and you said in a previous post that your neurologist is OK with that for now, so everybody’s happy, and that’s good. I hope all continues to go well for you.

There are people on here to take LDN (I don’t know anything about it myself) and who find it helps their symptoms - some RRMS people take it as a supplement to a conventional DMD. LDN is emphatically not a disease modifying drug, though, so should not be regarded as an alternative to Copaxone or similar.

Good luck.

Alison

x

12

Hi,

Sorry to hear about your diagnosis.

You asked for our thoughts so I won’t mince words.

The longitudinal studies are coming in now on the effects of the DMDs on progression as well as on relapses. The evidence is strongly mounting to show that the standard 4 injectable DMDs Avonex, Betaferon, Rebif and Copaxone all not only reduce the relapse rate but also reduce progression.

When you compare people’s progression in the days before DMDs to now particularly when people take them early in the disease course the amount of disability down the track is so much less.

This is not an illness that can effectively be controlled by a healthy diet alone, although having a healthy diet and lifestyle will always be of benefit.

LDN is NOT an alternative to a DMD. It has not been proven to reduce or stop progression. Some people may claim that has been their experience but a few anecdotal reports is not the same as full trials.

Please think this through very carefully. You may seriously regret your decision to not go on a DMD in 10 years time when you may be severely disabled by the disease.

I was in Limbo for the fist 4 years after MS was flagged as a probability and then when I was diagnosed and started on DMDs I turned out to be severely allergic to all 4 of them which is so incredibly rare as to be unheard of. But it did mean that I didn’t get treated in the first 8 years after probable diagnosis. I am now a full time wheel chair user and suffer horrendous Central Pain Syndrome and am 7 on the EDSS and have a carer 5 days a week to look after me. I often wonder how my life may be different had I started on a DMD 8 years ago and been able to tolerate it.

Please don’t risk ending up like me when you have a choice…… I didn’t have any choice in my situation but it really scares me when I hear of people putting themselves at risk when they don’t need to. Don’t underestimate how severe MS can be. The DMD ads tend to show bright bubbly people riding bikes and playing tennis and I guess that is the image they want to portray of how your life will be IF you take a DMD. But we don’t see enough images of how severely MS can affect people who’s MS is poorly managed or who were diagnosed in the days before the DMDs were available.

I have been in hospital for the last 10 days just to try and get my pain under control. I am now on an infusion that is usually used in palliative care to try and beak the pain cycle for me. I need to be washed by nurses, assisted with my toileting, wear a catheter bag, can’t mobilise independently, use an electric wheelchair, and I am 47 and a mum to 13 year old.

Have a look at this article and also google DMDs and progression

http://multiple-sclerosis-research.blogspot.com.au/2012/06/research-dmt-slow-onset-of-progression.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed:+blogspot/WvYVL+(Multiple+Sclerosis+Research)

Cheers,

Belinda

14

Thanks guys yes that was very to the point and i do appreciate such candid answers. However this is my decision and at this moment in time i feel happy with it. Belinda in particular I am so sorry that you have suffered so badly. Hope you feel a little better soon.

x

15

H All xxx

Belinda & Val - I just want to say a big thank you for being straight x you are right to let Beccy and the rest of us know the possible ‘realities’ of MS x

I know that people try hard not to scare ‘Limbolanders & Newbies’ with tales of wheelchairs and severe disability and that most media and websites use very ‘positive’ images of MSers.

I do however think that ‘burying heads in sands’ is not a good thing either!

I worry that it also gives non-MSers the idea that MS is nothing to be concerned about at all!

Only yesterday a friend said 'Ah ok! MS! That Montel guy has it doesn’t he - and there wre a load of peeps running the London marathon with it - so don’t give it another thought - you’ll be fine!"

Beccy - I’m in limboland and I don’t even want to think of DMD’s yet - I’ll cross that bridge if & when I get to it x

These are early days for you my lovely - you have a lot to deal with and I know if I put myself in your position I would probably want to hold out a bit to see how things progress.

But - I would also keep that open mind too - if my relapses became more frequent or more severe and dsabling I would not hesitate to rethink the DMD route - actually any route on flippin offer!!!

It sounds like your neuro is giving you the time & space to try alternatives - I hope with all my heart they help you xxxjenxxxx

16

thanks hun thats so sweet. yes and hes a great neuro who specialises in MS so im going to listen to him and my body! lol

i hope you dont have it as its not pleasant at all!!! keeping everything crossed fr u.

if u ever wanna talk pm me!

x

17

Val and Belinda have said everything i wanted to say! Well done to them!

I have had ON twice (like you have now Becky) I lost my sight in one eye each time.

Vertigo (like spinning round on the waltzer at the fair but cant get off the ride for a week)

I have had a total numb face several times.

I have passed out and constant feeling that i am going to pass out.

I have had balance problems so severe that i could not stand for more than 4 seconds at a time. (physio timed me)

I have collapsed on the floor at home and was unable to get up.

I have had severe lower back pain.

I have had the ms hug.

i was then diagnosed with ms. Started the dmd rebif 7 years ago.

I have not relapsed since. I have no disease progression. I have not lost my sight!

It is working!!!

I know you have made your mind up not to take the dmd’s but we want you to know the facts.

fingers crossed for you.

Best wishes

Teresa. x

18

Teresa, thanks for your comment. much appreciated. I never said i am totally ruling them out of course now. if i relapse loads in the next year then of course i will take them. Your case sounds more severe than mine. I have had 2 relapses that have both purely been sensory only. my neuro said at this moment in time my MS is mild hence why he is giving me time to think things through. Its 6 weeks today since my opticn neurtis started and yes i still cant see too well but it is better than it was 5 weeks ago. Was told it can take 12 weeks to get better so just got to be patient. My symptoms at the moment are:

1)optic neuritis

2)fatigue that comes and goes

3)slight back pain from my first relapse last year when i had 2 patches of demylenation in my spine.

4)on and off sleep problems but thats more anxiety related.

That is all i have, so in that respect I am quite lucky. Really do appreciate everyone’s comments, however just because one person has bad symptoms and DMD’s help them that doesnt mean its going to be the same for everyone u know?

Thanks again x

19

Just wanted to say that my neuro has said my ms is very mild also. I was told that i had rrms at diagnosis. After 7 years of the dmd i have now been told my ms is possibly benign (harmless).

They tell you what they think you need to hear at the beginning. They don’t know what course your ms will take and neither do we - unless you have a crystal ball!

Dmd’s are proven to work best when started early.

I know you are aware of all the facts but what kind of friends (us oldies) would we be if we stood back when we thought a fellow ms’er was making a lifechanging decision.

Of course you can change your mind if your ms becomes more active but if you have a big relapse in the meantime there is no going back. The damage may have already been done.

I do understand what you are saying - that dmd’s might not be for everyone and may not work for everyone. We are all different. Clinical studies have however shown the dmd’s reduce relapses and progression.

I think you have made up your mind and everyone has given their opinion. You have the facts.

No-one really knows what is best as there is no cure and it is unknown what causes ms. We can all just hope we have made the right decisions for ourselves.

Wishing you all the best and hope the ms stays ‘mild’

Teresa. x

20

Teresa thankyou so much for that.

Yes at this moment in time I will not be taking anything although will probably try LDN in next 6 months.

Of course i will prob take copaxone if i relapse again in a year.Never say never.

Glad urs is still mild. Hope i can be like that too

x

21

Hi Becca,

I think getting others thoughts on dmd’s is great - nothing beats hearing others peoples experiences because we’re all different and we all have a different story to tell.

Belinda and Val have - in my opinion - spoken straight from the heart and told their stories as they really are and for that I applaud them because that’s not always an easy thing to do. Sometimes though, straight talking is the only way to convey the reality.

You’ve already decided that for now dmd’s aren’t for you and of course that decision is entirely yours to make, just bear in mind what others have said about their own experiences. The option to change your mind is always there but whatever route you take make sure you’re completely happy with it.

No one knows what causes ms and currently there’s no cure. Having spoken to you, we each know what the other thinks on the subject already. So just ensure - whatever you decide - that you’re doing everything you can to help keep this ‘monster’ under control because that’s all we can do.

I’ll speak or mail you soon okay

Debbie xx