Hi
Has anyone on here been diagnosed and not taked the medication? If so, why did you come to this decision and how have things been for you? I am just curious as I never seem to see anything positive at all. It seems medication is the only answer.
So far I am lucky and feel well but I am not expecting to stay this way for ever. I just would love to hear something positive. x
I was on Avonex but I stopped it, and now have nothing, so I opt for healthy diet, vitamins and try to look after myself.
I’m rr and fingers crossed I am still managing most things.
Mark
Thanks Mark
I’m gonna see how I go too for a while I think 
Claire
Claire,
There is a train of thought that says the sooner you start on DMD’s the more benefit you gain in the long run, in terms of reducing the severity of relapses. I am assuming you have the relapsing remitting variety, the majority do.
I can undertand the desire to stay off drugs for as long as possible, but that may not always be the best policy. You need to read as much as you can about it and form your own opinion.
I have the progressive variety so the drugs option is very limited. Though I am not doing too badly, I have gone onto LDN in the hope it slows the progression, which I will benefit in years to come. That is the plan anyway, but as you know, it doesn’t always work out.
In the end you need to do what suits you best, but a healthy life style would seem to be a sensible option. Wine and chocolate excepted.
Paul
There are those of us out there who have never been offered anything other than symptom management, meaning if one has pain, then pain medication is prescribed. Not everyone with RRMS is offered DMD’s and some are doing very well.
As for me, Ive been suffering these past few years, although have had a good few years with just a few symptoms. Now my mobility is suffering, energy (zilch), and mood as ms does its thing. Im worse in winter.
I do take supplements: vit.d3 1,000IU x 2 daily and Evening Primrose oil. The rest of my meds are for IBS, GERD, and take Baclofen for muscle spasms and pain, plus 1 amytryptiline at night to help with sleeping.
It is possible to maintain a regime where if you rest plenty and pace activities one can cope. Also remember to see gp if you have any new symptoms and perhaps meds to try help eliviate them.
Best wishes
bren
x
Thank you Paul
Maybe you’re right. I think I must give it a go, I just don’t want to . I think I’m finding it hard to accept I have it at all, I know I will do it now because I have had a lot of positive feedback on here and its helping me alot. I’m scared of what will happen if I don’t start treatment but I’m scared of starting it too. I wish I could be more confident.
I have relapsing remitting type MS and I first got double vision last August and then had to have a lumbar puncture and further MRI at Kings in March. But I got that headache from hell and was in bed for a week and then my left leg wouldn’t work properly for a while and thats the only relapse I have had.
I am scared because I don’t seem to have any help when I have needed it so far. I feel like i,m sort of abandoned so when I’m left to pick a treatment I don’t have a clue and now I scared myself by looking on the internet. I feel so well at the moment and I could even trick myself to think I don’t even have it. That’s why I’m so indecisive I think. I think if they had offered it to me back in March when I was ill and dizzy I would have said yes straight away. I need to think back to that time really and then make my mind up.
Thank you for your advice and I may stay off chocolate but only need 1 glass of wine to do the job! Lol!
Claire
Hi Claire,
I have always been very much the same and tried to avoid drugs as much as I can, especially when i feel ok. It seems to go against the grain.
But the thing with DMD’s and other treatments, like LDN, you have to think ahead. It seems, and again this is just reading everything I can find, the sooner you can start halting or slowing any progression and reducing the effects of relapses, the better it will be in the long run.
Ant backing up what has already been said, the best person to look out for you, is you. Don’t expect someone to tell you what you need and when, you will have to check it out for yourself. That said, there are some who get some great help and others who don’t. So rather then wait, be proactive. At the very least you will know what questions to ask and understand what they tell you in response.
Be an expert of your own condition becuase at the end of the day it is you that is living with it.
Pass on the chocolate?
And just a single glass of wine, wow, your low maintenance.
Paul
Thanks Paul
Points taken, very good advice I think ,
And yes low maintenance when it comes to wine, one glass makes me very tipsy (thats the ms isn’t it? lol) but it doesn’t mean that I always stop at one! He he
Claire
Claire,
Just weigh up what everyone say, including your truly and then do what you feel best.
It could be the MS that affects your drinking, especially if that has not always being the case.
And no, stopping at one would be a shame. It gives me really bad headaches, so I just suffer.
Glass is empty, better go fill up again.
Cheers,
Paul
Hi Claire, only you can decide what to do, I guess that if you start taking something and you don’t like taking it (for whatever reason) you could stop taking it. If you’re worried about taking medicines long term, I just wanted to say that I have been on betaferon for more than 16 years and I don’t notice any effects from having taken it that long. Cheryl:-)
hi Claire.
my advice is to read up as much as you can on ms, treatments ect and go from there.
its i big dessision to make for some but was easy for me. ive watched my sister go through things over the years as she has ms also. she was put on copaxone pretty fast and hasnt had mush trouble since she has being on it. when i was told i had ms and was offerd dmd`s i opted for copaxone also and touch wood two years on it seems to be doing its job.
you need to do what you thinks right for yourself. lots of friendly people on here if you need to ask anything.
atb MTT
Hi anon,
Medication isn’t a bad thing. It’s a way of kicking the MS back to a place that it can’t trip you up, or knock you down.
I was so ill when I started my DMD and six months later, was back to normal again and so full of joy that I’d managed to get through the early relapses. I was totally euphoric - didn’t care about the injection marks, or the odd minor relapse. I must have been irritating to my family, but there was no other way to describe it.
I tried to keep going for a month or so without treatments, just to see how I got on. It was terrible. I looked at photos of myself on my 40th birthday and my face was so swollen after too many courses of steroids.
There are things you can do to help yourself, that are out of the sphere of knowledge of neurologists. Read about diets - there are several that can make a difference. In my case it was eliminating gluten, but it took 5 years to consider a diet. Vitamin D3 is looking good - I take 3 capsules or more per day of high dose (from Amazon).
Staying active and as strong is a huge plus. It’s difficult and there are days when there’s no energy, but don’t beat yourself up. Stress is a huge problem. I took LDN (low dose naltrexone) which helped with endorphins and made me feel good. Now, I take Citalopram, which has a similar effect. I smile much more now and feel positive and emotionally stronger.
What I found was that when things were awful emotionally (my husband has emotional/stress/anxiety problems)and my family almost fell apart as a result. I had to be strong. A neuropsychologist asked me if this was what was making me feel so weak physically. Lightbulb moment! It took years to recover my inner happiness and strength, but I got there in the end, after many, many changes.
It’s not a moral battle to take or not take a DMD. It’s about not letting MS take over your life. If you are offered a possibility to keep it at bay, ask yourself if you are worth treating? Of course you are. We all are.
hi
i have RRMS but not been offered DMDS…but i have tried cutting down pills i’m on but next day all the pains come back and yes i’m back on them again
suppose it’s a personal thing…if you can manage without then so be it…