I had an appointment with my wonderful MS nurse yesterday. The situation as it stands is: I was diagnosed with rapidly-evolving MS and have had two courses of Alemtuzumab, just before NICE licensed it for MS patients.
They recommend only two courses, whereas there have been people who have had a third or fourth course before NICE. Hmm. Can I have a third?
Please? Pretty please? I won’t complain about the hospital food?
Well….. Oh. Can I take anything else? I had a relapse in February?
Well, there is Tecfidera.
Yay!
But this Trust won’t give you it. Oh. Any new problems? The nerve and muscle pain in my legs has increased terribly. Every single evening, I’m in agony. Thank heavens for my automatic car, lol (this is where, for some bizarre reason, I imitate driving a car).
Well, there is Sativex, licensed for use in Wales.
Yay!
But this Trust won’t give you it.
Oh. You can see where I’m going with this.
I asked about Tysabri. No good, as I’m now – thanks to Alemtuzumab – not deemed as having rapidly-evolving MS. Vicious circle? So what are my options? At the moment, purely symptomatic. I don’t qualify for any disease modifying treatments.
My health is deteriorating. I know it shouldn’t, given the Alemtuzumab, but I also shouldn’t have had a relapse seven months after my last treatment. Don’t get me wrong, without Alemtuzumab, who knows where I would be now, and I will be forever indebted.
I pleaded my case: it’s only thanks to this medication that I am still working, still taking cheek from The Teenager, have enrolled in further education. And still manage to push the vacuum round every now and again.
No go. I left, by way of the WHS outlet, where I bought a trashy magazine to cheer myself up. Got to the car park and realised I had left my card in the payment machine in WHS. Schlep back, cry a little when talking to WHS member of staff who finds my card. She says she sees it all the time. I buy a chewy healthy bar and leave.
Get back home, letting it all sink in. I had explained to my lovely MS nurse that I felt I was up against an egg-timer and my time was running out. Could I see The Teenager through his horrible Nirvana stage and get him into uni? Would he ever get his hair cut? Would I complete my Masters? Without my beloved Amantadine, which combated my fatigue, I felt as if I was back to square one. Like an evil Monopoly game. Do Not Pass Go. Go Straight To Jail.