Hi everyone, I’ve been to see my MS Nurse today and had a nice long chat about how things are progressing. The short version is that I’ve not had any relapses for over 12 months but have been going slowly down hill instead. The Nurse, like me, thinks I’ve moved on to Secondry Progessive and we were discussing if there was any benefit to me to stay on Copaxone as the disease modifying drugs are really for Relapsing Remiting. I did say that I wouldn’t miss injecting myself everyday but surely doing something is better than doing nothing??
Evening All,I just had a quick butchers at your CV to find out a few things before I start blethering.Just to put my reply into context a bit of me me me.I was diagnosed in sept 2001 as RRMS and started a very gradual abseil into absurdity.In feb 2008 I was bumped up to SP, AND THEN was put on Copaxone after a course of MITOXANTRONE. I took it for 14 months and my abseil continued,so being a good boy thought I’ll save the NHS £5000 a year and stopped it.I cannot walk now.can just about transfer from bed,powerchair,bog etc.but strive to get out everyday on ‘Davros’ the powerchair.
RRMS, SP, PPMS. etc are labels that people attatch to us but we all have our own version of MS,and it looks like the NHS,Drug Companies et al are moving the goal posts as to which drug goes with which of THEIR labels.I have no regrets about stopping the Copaxone,'cos it did nothing for me,but would suggest if you can be @rsed to inject it you’ve got nothing to lose by using it.
The only way that any of us could know what was helping,would be if we had an identical twin who had never left our side,was diagnosed on the same day and was not given any drug treatment.That’s a bit unlikely so …
Oh,the abseiling thingy comes from nobody having told me I’m not still a climbing instructor.
Hi, I have the same dilemma am still on the copoxone but having a review in 6 months. The decision is still mine at the moment, but the symptoms just increase slowly and no remission. Like most people I just want to be able to get on with a normal life but I think it will have to be my own personal normal and the rest of the world will have to fit around me (makes me feel in control, ha ha) samj