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To treat or not to treat?

Hi I’ve been diagnosed for just over 18 months and as things improved for me after diagnosis and also probably because I wanted this whole thing to not be real, I opted for no treatment no further contact with neuro however I would contact my GP if things changed for me, now Ive had time to digest I’m wondering if I need to get to grips before things get worse, I’m still not keen on treatments and am relatively young (33) however my balance and co-ordination suck and numbness in my leg is more coming than going so I’m thinking maybe I should do something but I’m not sure what’s best, still very confused and angry with diagnosis but I would welcome any help you can offer, thank you

Hi Lugor, with the symptoms you are experiencing now I would suggest you take a visit to your gp. If your legs are being affected then there is always the possibility that you could have a fall and end up breaking a bone.

Janet

x

Hi Lugor

I understand your concern - it was exactly the same for me when I was diagnosed earlier this year. The neuro said I could have DMDs and I said no, but would think about it.

I did some of that thinking on this forum and got great replies from some of the lovely people on here.

My conclusion was simple. If it is during relapses that the risk of disease progression and increasing disability is at its highest, then taking drugs that are proven to reduce the frequency of those relapses must be a good idea.

So I got started on Avonex, a weekly injection which for me is no bother at all to do. It does give me flu like symptoms for the next couple of days - but they are not severe and I can live with it. I have agreed that I will change to Tecfidera tablets in January if the side effects continue.

It’s a personal decision of course, but having thought it through I decided it was a no brainer.

​Best of luck with everything

David

I was in denial for 12 yrs :wink: 12 yrs on I’m still doing so well, no issues, feeling healthy overall. But my neuro still suggested i do something to keep me well so i started tecfidera. No side effects for me. It’s a 2x a day tablet which makes the whole disease easier to swallow :wink: I’m 31, btw… Take your time deciding. X

Lugor. My advice would be this: get on tecfidera. and get on it now.

People say to do what you think is right and not to rush your decision, but frankly, why wait?

Tecfidera and many other facilities are out there and all can be beneficial with next to no side effects, with any sides that are endured being easily managed and dispelled.

The diagnosis of MS is crappy, and i mean full on bull5hit. But you have the means by which it needn’t impact upon the life you wish to lead.

Being a pragmatic bugger, I indulged the fantasy of denying what has happened for about one day. I then decided it would be far more prudent to take this bull by the horns and to stack the odds in favour of a more optimistic prognosis.

A rich life is one that is full of challenge; MS is just one of yours. So please, get to it.

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I’m with Paulo. Once you’ve got the disability, the drugs probably won’t make it go away. If you go on them earlier, you may never be disabled.

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I agree with Paulo too.

I’m stuck with MS, but don’t want to be an easier mark than I can help. So I keep ducking and weaving, reaching for the newer, stronger, more effective drugs as I need them, keeping the fingers crossed that there’ll be something even more effective by the time I need it. I’m not trying to ‘beat MS’ or anything stupid like that: no point. But I’m not going to leave any ammunition in the locker either.

Alison

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Lugor

You have to live with the decision, so you have to make the decision.

Peoples opinions are just that, their opinions.

I jumped straight into Avonex couple years after I was diagnosed, I was feeling the effects of the MS and decided I needed disease modifying drugs, how wrong I was. I went downhill at a rate of knots and have been confined to a wheelchair since then. I realise some people advocate certain medications, but for them to say that is no or minimal side-effects is again an opinion. What is the stuff doing to your insides?

In the last couple of years I have learned that anger does nothing but make you worse, take it easy.

Cut out all the crappy food (processed) and try to eat as natural a diet as possible, keep hydrated by drinking plenty of water and learn to love what you have.

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Thank you for sharing your experiences, still mighty confused what to do. When I was diagnosed my neuro stated she would not support me being treated with DMDs at that time due to me feeling well, I haven’t been back despite my symptoms worsening as I’m also confused what I can put down to MS or whats just life giving me a couple of bad weeks, I mean if I didn’t know I had MS many of my symptoms I would probably not think twice about where as now I think oh no is this the start of a downhill spiral!

tbh I wasn’t overly keen on the neuro which makes me reluctant to go back, I know there are others but can I ask to change?

i do of course eat healthy, exercise, drink plenty water etc (I also have fun and drink plenty wine too so it’s not all bad!)

Yes you can change your neuro! I did. Ask for a second opinion. I believe this is what you need. My neuro is ab MS specialist, a leading one. I’m lucky…he very much suggested DMDs despite me being so well.

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mickman is right - opinions are like arseholes - everyone has one.

he / she is also correct to say that a DMD with no side effects for one person, doesn’t guarantee zero sides for everyone.

however, things like avonex are virtually archaic compared to recent releases such as tecfidera; higher efficacy and lower reports of side effects and their severity.

unfortunately for mickman, their start on avonex coincided with a decline in health. this is sad news but one that cannot be blamed on the start of DMD; a decline may have been unavoidable.

fact is, MS specialists and neurologists and many other white coat wearers agree that early use of DMDs is far more likely to be beneficial than deleterious.

tecfidera for me offers few side effects all of which are very mild. this is good, because aside from some peripheral neuropathy, i feel fine. i take heart in knowing that i am munching daily pills which aren’t detrimental to my current condition but have been CLINICALLY PROVEN to be beneficial in the long term, for A SIGNIFICANT MAJORITY of users in reducing relpase rate and progression of inability.

you have to ask yourself, what have you got to lose?:

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Hi Lugor

Just a quick question, separate from the whole medication debate. Are you getting enough emotional support? Obviously, you’ve said that you’re confused and angry, and that’s normal. Being diagnosed is a huge thing, and will throw up all sorts of thoughts & emotions & questions. And many of those questions will be unanswerable, because so much about MS and our future with it is unknown & unpredictable. Then there’ll be lots of differing advice & opinions. And on top of that, while part of you will be thinking it’s sensible to start on some medication, there’s probably also a big bit of you that is fighting doing that, because it wants to hold on to the idea that everything is normal, and you’ll be able to carry on living your life as if nothing has changed. No wonder you’re confused!

So I think it’s important you have support, places where you can get out whatever you’re feeling, have a rant or whatever. That may be with friends & family, professional support like a counsellor, or in a journal. You may find that some of the things you feel will be unpleasant or even scary. But it’s a normal part of the grieving process, and many of us here will be able to relate. And I just want to say as well that there is still much that you could do or achieve in life (like a couple months ago, I completed a scholarship to learn to fly with a charity called Flying Scholarships for Disabled People). Your life is not over.

Dan

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