I have been asked to write a blog post, by a professor of neurology in the UK, for a site that has a far more medical/pharma audience. And the odd nerdy patient like me 😉
I am interested in your diagnosis experience, specifically about the help you did or didn’t get choosing a DMT. Nothing you say here will be attributable to an individual. Anonymity is key.
Specifically: I am interested to learn how much help and direction you felt was given to you.
I am not interested in what you think your doctor(s), nurses or drug companies thought they were doing but how you felt about the choice when you had some time to reflect.
It is my contention that when someone is newly diagnosed it is a pretty overwhelming experience. Shock, disbelief, fear, denial, the hospital/clinical/medical environment that you are thrust into are all suddenly entirely normal.
Amongst all that, someone tells you that you really ought to be taking a long term, quite a powerful drug many with terrifying sounding side effects etc. Forever!!! That’d shit me up! It did, but I am blunted by 26y and existing on the periphery of ‘that’ world already – personal and professional reasons.
SO: answer 1 or answer all, I am just interested in how you feel about it. The questions below are guides to think about. It is how you felt and why you felt that way that is of interest.
– did you feel you were given enough guidance towards a drug?
– did you feel like you were expected to choose one?
– were you just told you’d have to go onto ‘X’?
– were you told why it was so important?
– were the potential risks explained and put in context for you?
– how do you feel the answers were pitched to you? At, above or below the level you felt comfortable with?
Many many thanks, I appreciate any time and effort that you make to help me and the wider patient community.
Please feel free to post here or for additional privacy email [email protected] (this is an email I have set up, no one else sees it)
It will take a month or two and I will post the link when it is published. I’ll reiterate – no one will be named.