Last reply 1 month ago
Newly diagnosed – UK MSers advice please

I was dx (RRMS) over the phone on July 24th, a year after the symptoms which led to initial referral by GP to Neurology. Consultant said he was ‘anxious to start treatment’. I was given two weeks to decide between Aubagio and Tecfidera. Told if I chose not to have treatment I’d be discharged back into general neuro. Emailed with my decision to start Aubagio on Aug 4th. Got email saying I’d be sent an appointment in the ‘near future’ on Aug 10th. Got curt email back today, in reply to my polite email Aug 14th asking for a timeframe, to say I have phone appointment on Sept 10 for ‘DMD education’ (not sure a month counts as ‘near future’). I have also been given another phone appointment on Oct 16 for ‘MS Education’. No details on timeframe for actually starting the DMD that consultant said he was so anxious to start on July 24. Nothing about who my MS nurse will be. They seem to think I was complaining about phone appointments which I absolutely wasn’t.

So my questions are:
Is it normal not to be assigned an MS nurse straight away?
Is it normal to be discharged if you don’t take a DMT?
Is the timeframe normal (sounds as if I won’t be starting DMT for months)

I’m feeling fairly dismissed, I’ve waited a year for this dx, and had been under the impression that once I finally got it I’d be treated as if I had a progressive neurodegenerative disease, not as if I was being difficult. Am I being difficult? My understanding of someone saying they are anxious to start treatment doesn’t include waiting what sounds like at least 2 months… All I really want is a timeframe (I do need to consider my work, given that Aubagio requires bloods every two weeks for the first six months as far as I can tell), and I’d like to have been assigned an MS nurse with whom I could discuss my diagnosis! I didn’t want to start my relationship with my MS clinic feeling so negative about it all, and stressed too, which I am really trying not to be, given that it’s not helpful to MSers.

Be great to get your feedback…

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