I’m wondering if there is anyone who has been on Avonex out there? I’ve been on it for 15 years and no one has checked up on me for the last 13yrs. My doctor just shrugs if I have a M.S. related problem and I suppose I can’t blame him as M.S. affects us in different ways.
We must have started about the same time - August 2000 in my case. Avonex was great for me for many years, but in the end it stopped working and I needed to move on to the hard stuff.
When you say no one has checked on you, are you saying you haven’t seen the consultant neurologist who prescribes your Avonex for 15 years? Crumbs! That must be a record for someone on a DMD. They obviously haven’t forgotten about you if they are prescribing your Avonex, but it is remarkable that you have slipped through the review cracks in that way. I was called in once a year without fail, even when there was nothing much to report.
Which doctor is doing the shrugging? The GP? That would be sort of fair enough, because MS treatment does tend to be hospital-specialist-led these days, and GPs are typically reluctant to get too involved and would prefer to act on advice from the consultant neurologist. I don’t like the shrugging, though!
13 years, not 15. Still pretty impressive, though!
haven’t you even got an ms nurse?
if so, do you get seen by her/him?
if not then that is shocking.