Tuesday, 25 January 2011

The waiting game

There's always been a 13 week waiting list for DMD's in my health trust - basically the neurologist recommends you go on the drugs, your name goes on the list, you visit the MS nurse to see the needles and decide which one you like best (honestly, you couldn't make this stuff up) and then 13 weeks from the process started you get to try them out.

Now, when my neurologist placed me on the list last January (2010) he also pre-faced his advice with the line, 'You have to be off the drugs for at least three months before you even consider trying to conceive, because we have no way of knowing the impact they may have on an unborn baby, so if you want a family you may want to consider having it now.'

I subsequently went to see the needles and decided I'd rather go through labour first! Well, sort of. In truth, J and I were ready to have a family so we decided to try for a baby while I was waiting the 13 weeks - and lo and behold we now have Charlotte, our first baby.

Following her arrival I gave myself a few weeks to get my head around being a mum and then phoned my MS nurse to get me back on that list. She told me that just 12 months after first being placed on the list things have changed. Now, every case is judged individually by the powers that be (ie. the men/women that hold control the money) so I'm now waiting patiently to see if they allow me the opportunity to at least try and stop this illness in its tracks.

It's taken me some weeks to write this post because every time I mentioned it before now I've gotten so frustrated I've cried. Put simply it annoys me beyond words to know that someone who I've never met before holds my destiny in their hands. It also winds me up that because I choose to have a family first the rules have since changed.

I wouldn't change my choices if I could do it all again - because then I wouldn't have Charlotte - but there's no denying I feel let down by 'the system'.

No one else lives my life, so why should someone else have the right to deny me a way to make it better.


  1. You mean to tell me you can't get on MS meds until these people review your case? If that is the case then that is crazy! In the US it is much easier than that. I had no problems getting on Avonex w/in weeks of my diagnosis. I'll send positive thoughts your way. Thank God you have that beautiful baby girl to look at everyday!!

  2. i am so sorry you are going through this! i can't imagine what it would be like to not be able to have the meds i need... .of course, that is what we are headed for with Obama's healthcare plan.... and the thought of not having my copaxone scares the you know what out of me...

  3. If anyone is going to fight this missus, you are. xxx

  4. I should clarify ... the chances are they will say yes, my MS nurse just said the new process means a longer wait ... so hopefully I'll be getting sorted some time soon - thanks for your thoughts and comments :)