Monday, 21 June 2010

To drug or not to drug

It was back to the hospital last week for an appontment with my MS specialist. Technically though he might as well not even have bothered seeing me.

Firstly, I mostly spoke to the MS nurse. She is fantastic and asked me lots of questions that I gave honest answers to. And to her credit, she made lots of notes as I spoke. In short, I told her that since my relapse at Christmas I have been relatively well. There is some residual pain left in my feet, and that varies from hour to hour, never mind day to day, but generally I’ve been ‘grand’ - as we say here in Derry!

J and I also got the chance to ask her about the drugs again, and express our wish that I remain on the waiting list while pregnant. There is currently a three month waiting list for drugs so I want to be right at the top of that list as soon as I choose to start the treatment.

That’s something else we will have to talk frankly about. I’m not sure I want to give birth and start injecting myself with drugs straight away when I have no idea what sort of reaction they will have on me. Ideally, I will give myself a few months to settle into a routine, get myself acquainted with being a mum (eek!) and then think about moving forward with treatment.

There is also a very real chance that I have a relapse straight after the birth. This is not true for every mother with MS but I have been told very succintly that there is a higher risk. So, it’s very much a wait and see process.

Additionally, I have an ideal senario in my head in that we will add to our family quite soon after our first baby arrives. I’m not talking a few months later but maybe ten or twelve months later - my idea being that we ‘get it over and done with’ - which sounds very clinical but I’ve always been a practical type and I figure that once you get into the way of changing nappies and making up bottles you might as well keep going!

Anyway, the crux of the conversation is that both the nurse, and the specialist (once he deemed me important enough to talk to) say that I should really give myself at least twelve months on the DMD’s for them to have any worthwhile effect so it’s looking as though we have another choice ahead.

The first option is to have baby one, stay off the drugs and take what’s coming on the chin (which may of course be absolutely nothing) and then proceed to have baby two pretty soon - as I outlined above.

Option two is to have baby one, give myself a few months breather, take the drugs for at least a year, giving them a chance to have some impact, then come off them for the required three months before we try and conceive baby two.

At the minute I’m concentrating on staying as well as I can throughout my pregnancy and with my husband being the ever constant voice of wisdom in my life, he has made a very sensible suggestion that we have baby one and then make a more informed decision once it’s here safe and sound - he’s never been one for looking too far ahead and at this juncture I think his wait and see approach is one I’m going to take.

Before I sign off, I should go back to the specialist - he really was with me for all of 2 minutes and my husband and I both felt that his demeanour gave us the impression that each of his seconds was very precious and could we please just hurry up and let him get back to his job.

I understand that the NHS is at breaking point, and that he probably did have a massive case load to get through that day, but I am a human being, not a number. It would be nice if he could remember that sometimes.


  1. Thank you for your wonderful blog. I know what you mean about doctors who seem to think they are doing us a huge favor by seeing us! I'm newly diagnosed (Feb) and coming to grips with the fact that I had signs and symptoms of ms for *years* before there was that flare-up that changed my life - how much in denial could anyone be? Now I am still so pig-headed I don't want to take the betaseron the doc finally prescribed for me, what a prince - after trying to strong arm me into being part of a monoclonal antibody clinical trial (124 subjects, only 4 got malignant melanoma!!!). Here in the US there's no waiting period for abc drugs, they are shoved down our throats so long as we can afford them (ha!). I think there must be another way...
    I'm wishing you all the best with your pregnancy and all the rest of it. Keep blogging! I will keep reading.
    -Alissa in Tucson, Arizona

  2. Thank you Alissa ... I'm delighted you're finding my ramblings beneficial! When I was first diagnosed I trawled the net to find some blogs from 'people like me' rather than reading endless medical books - and I've found that their writings have definitely helped me more - blogs are honest and not afraid to talk about the daily trials and tribulations in all of their gory details, giving proper advice into the bargain! As for the drugs, I'm hoping that the oral form will be ready by the time I get round to taking them - avoid the injections at all costs :)
    Take care, Catherine