Forum

should i stop dmd/painkillers

I have put on nearly a stone since Christmas -since going onto pregablin- came off gapentin due to depression. I hate doing the jabs- i was on avonex but after 10 years dr decided it wasn’t working. Feel like i need to take control of my body and stop having every one else decide. I know my body… Family get paniky and can only see the down side… Nursing team are ok but really haven’t got the time to discuss in depth. I know if i stop treatments i would be on my own unless i have a major relapse

Thankfully I’ve had no relapses for about 5 years little things have stopped working but i cope, i work, i run a house, i get on i feel like a fraud- worse a lab rat

what to do???

any one else felt like this… ive been diganoised 12years never been on a forum or joined in because i feel lke i don’t belong

there are people so much more worse off than me

Welcome to the forum, and of course you belong!

Sorry, I’m not clear whether you are taking a DMD now? Did you stop Avonex? Are you on another DMD instead? It does sound as if you could do with a proper sit down discussion with your neurologist about what he/she thinks about what your MS is doing, what the treatment options are and what you can hope to achieve with DMDs. Sometimes it is good just to step back and and review the situation so that you feel that you are in the driving seat. Nothing so dispiriting as feeling of having things done to you by the medics. It sounds as though you think things are drifting a bit in terms of how your MS is being managed. It would be good if you could wrest control back.

Alison

x

p.s. there is always someone worse off than all of us.

Hello and welcome to the forum :slight_smile: Like Alison, I’m rather confused about some of the details in your post. How can your neuro take you off Avonex because it’s not working when you haven’t relapsed in five years? Does he think you are now SPMS and not RRMS any more because surely not relapsing would mean that Avonex is actually working really well? If, instead, you are choosing to come off Avonex because of side effects, have you considered switching to Copaxone? No “flu” with that. If you are on a high dose of pregabalin, have you considered how you are going to cope with neuropathic pain? Have you discussed alternatives with your MS nurse and/or GP if you can’t cope without something? It’s funny you saying you feel like you have no control - for me, my DMD and other meds are my way of being in control; not letting my MS rule my life. Perhaps that has something to do with me choosing and having an active role in deciding which meds I take and what dose? Might this help you? I’m wondering whether or not coming off gabapentin has helped your depression and what support you have had with it, eg counselling? It seems quite soon to be making big decisions - would it be sensible to wait until your mood is definitely back to normal? Karen x