I was diagnosed 12 years ago and have never been offered any treatment. The Neuro said that the side affects would outweigh any benefits. I now find out that everyone that is diagnosed now is offered treatment. As I am getting worse I am not happy with my treatment - or lack of it! I also have only seen the Neuro 3 times in 12 years and always at my request.I thought we were supposed to get regular assessments. Has anyone else had the same experience? I really could do with getting an assessment but I have to make an appointment to see my GP to get a referral to the Neuro. My GP doesn’t understand MS and its hard to get an appointment when it suits me. I feel like I have been let down by the system in a lot of ways. The GP when I saw him a while ago seemed to question if I actually had MS…
The Barts Blog is clear on the value of early treatment and has been for years.
phone the hospital where you were diagnosed and explain to whoever answers the phone that you are feeling neglected and need an appointment soon.
have you got an MS nurse?
if not, ask for one.
become an impatient patient!
as stroppy as needed.
Caroline, your neurologist is/was giving you bulls***. I was dx 12 years ago & given DMDs straight away, I wouldn’t be happy with the way you’ve been treated (or not) either. Carole’s right, create holy hell, someone’s let you down, big time. xx
Why you don’t have treatment? or maybe you don’t have MS and you were misdiagnosed.