I got diagnosed two years ago, and have seen neurologist etc, he has suggested that it time I went onto meds, but at the moment I am being what he calls stubborn.
i haven’t had any meds and yes my symptoms are getting bit bad, but I also have to think how this affect my mum.
i am full time carer for my mum, she has dementia not bad but there. I also am self employed and think if I go on meds I’m admitting defeat. Any thought be good, and thanks
Not sure what the fact your mother has mild dementia has got to do with your decision to take or not take DMDs. And going on to drugs is not ‘admitting defeat.’ Having said that there are people who after a lot of consideration - looking at the different drugs and possible side-effects decide not to take any DMD’s. If you decide to take DMD’s do it now.
Actually I think you have it backwards. Admitting defeat is refusing to take disease modifying drugs (DMDs) which will stop relapses from increasing your disability (assuming you have relapsing remitting MS).
Fighting off the relapses with effective DMDs is refusing to admit defeat. There are now so many DMDs available. Yes, drugs all have the potential for side effects, some more than others. You need to balance out the risk of side effects against the benefits of relapse reduction. If you want the least chance of side effects, go for Copaxone. It also has a low potential relapse reduction rate, but you would still be engaging with the enemy.
If you were prepared to take the chance of greater side effects, chances are you’d get dividends in relapse reduction rates.
Staying as fit and healthy as you can, means taking care of your mother and your business is more realistic.
Have a look at MS Decisions aid | MS Trust At least if you have considered all the options, you are making an informed choice. If you then decide not to take the drugs, you’ll be fully cognisant of the risks and benefits.
As Sue says, I think refusing to take meds, being in denial about MS, is effectively admitting defeat - it’s like saying there’s nothing you can do. But taking DMDs is you taking control. It’s doing the best for you, your future, your mother, everything you’re responsible for.
You admit that symptoms are getting bad, so you gain nothing by doing nothing about it. Medications for specific symptoms can help, things like physio or pilates help, and DMDs help. If any specific medication doesn’t help, then ask to try another one. It’s a no brainer for me!
I suspect you know it’s the right thing to do. So be brave, you can do it!
Totally agree with Sue. Teddie, I dont understand your rationale to be honest. You have to care for your mum, well surely taking a medication which could effectively slow down your MS to a snails pace and make you stronger is the way to go isnt it? Its not admitting defeat. Is that the reason though, or is it because your SCARED to take the DMD? Maybe frightened they will make you ill and take you off your feet even for a little while, whilst your body adjusts to them? If i had the chance of a recovery at the start i would have snatched someones hands off and gone for it. I have nothing with PPMS. no choices. You have a choice, you could get a lot better, or you could get a lot worse, why on earth are you taking the latter road?
p.s. Have you considered you could get help with your mother perhaps a care worker from the government which will enable you to as you put it ADMIT DEFEAT? Adult social services team can come and assess the situation. If you do get worse because you dont try to get better who will look after your mum then?
I started on Avonex just yesterday and despite a few intense side effects I am glad I’ve started. I don’t want to be injecting myself weekly but the fact that I could prevent relapses is worth it for me. Please don’t think you’re admitting defeat, I see it as you’re giving yourself the best possible chance. I would at least consider it. Good luck whatever you decide.
Hi Teddie How are you doing? Some of our replies have been quite firm, but we’re not meaning to criticise - just to help you see how important this is. We want the best for you and don’t want for you to make things harder than they need to be Dan