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.
🙁
I hate the phrase “rapidly-evolving MS” and the fact that in a lot of places you have to get to the point of almost no return before you can get help :/ What is wrong with trying to stop problems before they happen? I know a lot of it comes down to money, but in the long run it saves money treating a person with these meds
Exactly! That’s precisely what I was trying to say at the appointment. I make no demands upon social services. I am still in work, still studying. Still, in effect, being a productive member of society. And this happens. Meh.
x
Gosh! You’ve packed a lot in on this post.
Yes, let’s here it for the MS Nurses and I guess my (our Local Health Trust is …..) All I can say is that the MS Nurses were/are irreplaceable!
Jonny
P.s. Now, where IS that mobile?
I don’t know where I’d be without our fabulous MS team. All of them are incredible and do an amazing job with few resources. They’re absolute lifesavers!
x
meditation/relaxation, cod liver oil/salmon oil/anti inflammatories, astaxanthin, proper eating habits and solumedrol if/when needed if under an attack/escaserrabation. Drugs are a last resort. If you feel you need alternate medical attention or allopathy, there is homeopathy and/or naturopathy (alternative and much more). Choose your poison. I’d choose to spend more time on yourself and your habits, whether food, exercise, massage, acupuncture, reflexology, reikie, etc, and/or entertainment as it mostly relates/dictates your persona; health/well being. If you’ve the resources, go with what works for you.
I hear you! I take a lot of supplements and I have a pretty good lifestyle, plus I’m a lot happier with my life right now.
Add to that, I trained as a homeopath for four years and used to run a clinic 🙂
But, nothing I tried put an end to the cycle of relapses I went through before Alemtuzumab.
x
Hi! Why can’t you have a third course of Campath, did your neuro tell you why not? Also, can I ask did you have your second round sooner because of that 7 month relapse? I’m a Campath gurl and information hoarder…!
Hello!
I had Campath before NICE licensed it, so off-license. Now that they have licensed it, they only recommend two courses, which I’ve had.
I had the relapse seven months after the second Campath. Only a minor one, but still upsetting. Totally new symptom.
But! Wouldn’t have been without it. I was in such a bad way before, relapse after relapse 🙁
x