So, by now you will have read that MS has no cure. The only treatment that is on offer is something called Disease Modifying Therapies (DMTs)… what these guys do is potentially reduce the chance of you having a relapse/attack and they could slow down the progressiveness of your MS. Did you notice that I used the word potentially and could in that sentence, that’s because it isn’t guaranteed?
Once I had been officially diagnosed I started researching into the drugs available on the NHS, I needed to understand what the benefits and risks of each were. I signed up to the British Medical Journal so I could start understanding the grassroots research behind these drugs etc. and also the Association of British Neurologists (ABN) to get my head round the prescribing guidelines for the DMTs. I felt like a student again researching for my dissertation, just minus the cans of red bull and hangovers!
Everything I read, said the sooner you start treating MS the better it is, and I found two very different approaches in neurology when it comes to deciding what you will get. Now I am no neurologist, so please don’t take my words as medical gospel! I really can’t afford to be getting sued when I’m trying to get my garden landscaped (who knew gardeners were so expensive eh!).
So these two approaches are Induction and Escalation. Now in laments terms Induction is where you hit the MS hard at the beginning with the higher efficacy rate drugs to try and prevent or slow down damage, and escalation is where you start off treating the MS with lower efficacy % drugs and only increase the strength of DMT if the disease worsens or shows signs of active progression.
So I done all my research and was feeling quite nervous, I didn’t know which approach my neurologist would adopt, but I knew that the induction approach was by far the best one for me. You see what I wish more Drs and Nurses would try and understand is that whilst they see the risks of some of these treatments greater than the risk of disease progression, for me, living with MS, it’s the other way around. I’d rather have stronger treatment NOW and understand the risks of that, than just tickle the surface with lower efficacy drugs “hoping” the disease doesn’t progress and I won’t need stronger treatment…. That approach doesn’t make sense for me and is NOT how I would approach anything else in my life, so why would I do it for this.
Problem is, it’s not in my control is it…
I printed off all the journals, highlighted the keys bits, and went to my neurology appointment feeling like Elle Woods out of Legally Blonde. I knew that at the stage I had the options of drugs ranging between a 30-54% efficacy rating…obviously I wanted the 54% one but I didn’t know if this guy would give it to me or not. I’d done my research on him, the-kinda-research-you-do-on-a-new –boyfriend-kinda-research (kidding, as if I do that…) but couldn’t figure out what approach he preferred, now don’t get me wrong, this was just my way, some people may prefer to leave it all to their neurologist but I needed to have some ammo to give me even the tiniest bit of control over my own health.
Hi Rachel, I’m Dr BlahBlah….
Hi Dr BlahBlah, I’m Rachel…
“So, I have been reading the ABN journals on DMTs and prescribing criteria…” he stopped me there.
“You don’t want to be reading them they could be confusing…some of them could even be rubbish”
Really, I’ve read all of yours, are they rubbish? …. Don’t think he was expecting that.
Suffice to say I think at this stage he knew I wasn’t going to sit there and be a nodding dog.
As I expected he offered me the lower efficacy rate DMTs and I told him I wanted the higher ones, which I got. It was a frustrating appointment for me, because I really wanted the “lets hit it hard or go home” approach, and it wasn’t there. But that doesn’t mean I have given up on this, I genuinely believe that my treatment wishes should be taken into consideration, as should anyone dealing with MS. God help the poor guy.
The medical side tell me that the stronger drugs/treatment come with higher risks (eg. Dying!) , and I get that. But, they aren’t in my shoes are they. For me, the chance that I could end up permanently disabled, justifies the risk of these treatments 100% for me. And as everyone tells you, you don’t know what path your MS will take, but that’s a risk in itself isn’t it, I can’t assume that mine will be an easy one and just settle for any type of treatment, I want the strongest treatment now, to give my MS a massive kick up the arse and if that is still only a tiny tiny chance, then hell I’m taking that rather than the alternative.
I appreciate that not everyone in my position will think like me, but that’s why I believe I should have a say in what treatment I want, as everybody’s MS and outlook on treatment is different and should be respected, I don’t think we should all have to fit inside the “one size fits all” prescribing criteria and tick boxes.
Anyway, I am seeing my neurologist tomorrow, it’s that big appointment where he checks how I am doing and tells me stuff that could scare me (he asked me last time did I want to know when he estimated I would need a wheelchair…I said yes…he told me…then I said the chances are he could be in one before me). I must be a nightmare of a patient mustn’t I, the poor guy, he is actually nice may I just state.
Anyhow, this is just my approach to my treatment, if I could give anyone any advice, it would be to make sure you speak up for yourself, ask questions, do your homework and fight for what you believe is right for you. Having MS is not a choice, but how we fight it is!
Does anyone else who has MS and could be reading this think the same as me? If so please let me know, I would love to hear from you.
Thanks for reading,