Hi everyone, Just had a really strange meeting with my neuro. I have been on DMDs since diagnosis and have had 3 relapses intotal due to pregnacy, hormones etc. Quite good considering I have been diagnosed since 05. I have little ill effects following relapses except the usual when I am tired my legs ache, eye sight is not as sharp, slight tremor, balance a bit off, no sensation in my bladder. Very good really. Well he said that maybe my ms doesn’t need the avonax as I am benign?? But I feel that the dmds are working really well and I am looking after myself very well and managing my symptoms. Terified that he won’t prescribe the avonax anymore. When I stopped the beterferon to have my daughter I relapsed, 3 months after stopping. Why stop a good thing if its working?? I have a feeling its a funding issue, have no evidence but it feels wrong. Has anyone else had this problem and what did they do?? help
I think you need to have a proper conversation with him about whether he is happy for you to contine. You can’t live with the fear of having it taken away at a moments notice as that is bound to cause stress and aniexty. Also it does not sound like ‘benign’ MS if you have relapsed more than once? Why would you be on the drug in the first place, it doesn’t make any sense at all. Have a frank open conversation, explaining your concerns and see how things go. If he says he wants to stop your treatment ask for a second oponion.
Thanks , I think that I am going to have a meeting with my wonderfull ms nurse.I am going to get her to go though what his thought process is and see if we can’t unravel the mystery. I am not stopping with out having evidence that I have no active lesions and that I am not going to relapse 3 months after stopping. I think he is just trying it on. Yes it is stressfull and we don’t need stress!!