Reply To: Diagnosis – the long and winding road

Home Forums Speakeasy Diagnosis – the long and winding road Reply To: Diagnosis – the long and winding road


henrietta
1 month ago

@cameron Dr Brownlee. He said he was ‘anxious to start me on treatment’ on July 24, gave me a couple of weeks to decide which – said he got nervous if people didn’t get back to him within two weeks. A few days later I asked – by email – what happened if I chose not to take one (it was hard to remember everything when diagnosed by phone) and was told I would be discharged altogether, back into general neurology. I told them on August 4 that I had chosen Aubagio. Since then I’ve had one letter telling me I had an appointment in the clinic mid October – I had to ring to ask what it was and was told it was for an MS nurse. I’ve not been given a named contact. I had an email back week ago, from neuroadmin, saying I would have an appointment ‘in the near future’. I emailed at the end of last week to ask what the timeframe might be and work up today to a fairly curt reply saying I had an ‘education’ appointment on Sept 10, by phone, no details of when I may actually start Aubagio despite Brownlee’s stated anxiety to get me started. The email seemed to think I’d made a fuss about phone appointments but I hadn’t. I feel fairly dismissed, as if I’m making a fuss. I did not want my first contacts with my specialists to make me feel like this. I’ve seen other posts here where people have been recently diagnosed and they have already spoken to their ‘lovely’ MS nurses and it’s making me feel sad.

@dangooch when were you diagnosed? Great that you already have an MS nurse! I decided on Aubagio but have absolutely no idea when I am going to start. As I say above, I was told in no uncertain terms that if I didn’t choose a DMT I would be discharged.