FINALLY after throwing all my toys out of the pram yet again (politely but with some force I have finally heard from the hospital confirming that I am starting on Tysabri!
I have been trying to get started on DMDs since a few months after diagnosis but it has taken over 3 years to finally get to this stage. I have been playing a long game of NHS Snakes and Ladders for all that time with delay after delay after delay. (Part of it was my fault, I suppose because I moved from London to Wales so I went from 1 hospital to another that falls under a completely different part of the NHS. That REALLY confused them.)
Today I phoned my consultant’s secretary (again!) and asked her what was going on and pointed out that it had been 10 months since my consultant agreed for me to go on Tysabri and I had not heard anything about a start date despite promise after promise and I was worried that another JCV blood test would be out of date.
When she said, “I’ll speak to the woman who arranges admissions and get her to call you about a date soon” I asked her “So, could you give me an idea of what YEAR “soon” would be?” She was shocked to say the least.
BUT the person who arranges the appointments called me, with a date 3 minutes later!!! First appointment is on 13/08. Hurrah.
So now, of course, I am starting to get anxious about what I have agreed to! Stiff drink for me tonight I think!