I was diagnosed with MS 3 weeks ago and as yet have had no appointments with MS nurse or any news on when I will start treatment. I have had optic neuritis and have leg weakness and am terrified of losing more mobility waiting for treatment. Would be good to know how long people have had to wait or what I can do to speed things up!
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I am sorry to hear of your diagnosis. I’m afraid you will probably need to steel yourself to chase up appointments more persistently than you might like. The consultant’s secretary is a good place to start. It is definitely worth being polite but persistent – referrals can get missed, communications can break down – you shouldn’t assume that things are going to work the way you were told they would.
Keep at ‘em, and good luck.
Sorry to hear about your diagnosis.
I was, very recently, diagnosed also. After my initial diagnosis, it took about 3-4 weeks before I was seen by the nurse. Then about another 3-4 weeks before I started on Ocrevus (last week was my first half infusion).
What I would say, that pushed things on a wee bit quicker; do your homework before you meet your nurse. She was all prepared to talk to me about MS and also available treatments. I ensured that she knew that I was well versed on what MS is and my potential prognosis but more importantly, I told her that I didn’t want Kesimpta but wanted to try Ocrevus. I explained how they function and why I had made my decision. My fear was that we would talk prep for an hour, go away and come back to talk decisions. So I wanted to skip that step.
Asides from that, pester them as politely, but pushy, as possible.
Best of luck
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Great advice thank you
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Thank you for that insight, I will certainly start to research my options and hope for treatment pre Christmas! Thanks again
Not a problem. I tend to overdo (?) the research part but I do find it helps me with the stresses of not knowing.
I was diagnosed in October started treatment in January so about 3 months would have been 2 months but I swapped dmts to a higher efficiency so took a bit longer
When I was diagnosed, there was a 10 months waiting list on the NHS for the MS Neuro. This could be reduced to a week if you went private.