Tuesday, 9 June 2015

Raising MS Awareness - My interview with MS Trust

Yesterday I was interviewed by a lovely chap called Stephen for MSTrust.org.uk on the subject of MS and my choice of treatment .....
This is the list of questions they had for me :
What treatment options were you offered when you were first diagnosed? Did your neurologist discuss your options with you?
A - Beta Inteferon, Tecfidera initially, both of which would have serious impacts on my life or existing medical conditions. Then Tysabri was offered, by that point I had done all my research, I knew I wanted Lemtrada - No negotiating with MS it was going for my legs - I wanted to crush MS into submission. My neurologist listened to my reasoning for Lemtrada over the others, laughed and said she should have expected me to say that, understand what I wanted and to put my case forwards for having it then got on and started the process - Dr C is EPIC
Did you do any research yourself to find out what your best options were? What did you find useful and not useful?
Loads, my MS Nurse suggested Shiftms an online discussion group which is incredibly positive, they also have Emma as a member, one of the first to put together an amazing Blog about Lemtrada and her experience with it. From there by the powers of facebook I found the 2 Lemtrada groups which are incredibly informative with people having treatment posting in real time about their experience and people who have had Lemtrada all the way back to the initial trial offering a wealth of knowledge and support to the 'new Lemmies'.
 Google 'Lemtrada Blog' 'Lemtrada Journey' - basically Lemtrada anything there's a wealth of information out there. Add in Campath or Alemtuzumab and off you go, the history of the drug unfolds along with a wealth of information about how it's administered, what it will do, the risks, the benefits. My first and primary goal was to halt the progression dead in it's tracks - any improvement of existing symptoms is a bonus (of course so many people have improvements that if I don't see any I'm going to be as mad as hell and feel really really cheated, but the primary goal is to halt the progression - it got this much and I'll be damned if it gets any more from me!!!!)
Did you come across the theory that “early aggressive” treatment might the best option for people with MS? If so, where? (A blog/the Shift forum/other?)
The aggressive early treatment theory was something on the drug recommendations for people with MS, unfortunately the guidelines produced then stated you have to have tried and failed 2 other DMD/DMT's before you're offered it - Erm sorry did you not read the 'early treatment works best' bit on the drug profile ? 2 other treatments could put you getting Lemtrada back 2 years ... that's 2 more years of lesions and scaring to your brain and spine that might not be able to repair if left long enough (think of a scab on your skin - don't mess with it allow it to heal quickly and it might repair with no scar - pick at it, scratch it and delay it's healing and it will end up as a bigger scar than the original injury and it won't ever go away), 2 more years of potentially disabling symptoms (bear in mind the first things it did to me was take away my ability to feel anything - then it went for my legs in a big way) - sod that - the project manager in me has to plan for this, ensure I have all the required resources at the right time to mitigate the risk of failure to deliver (a good and MS Symptom free life)
How did Lemtrada first come up as a treatment option – were you offered it or did you push for it?
As I said, I went in to see my neurologist armed with every piece of information I could about the drugs I had been offered, the alternatives I might be offered and my compelling reasons for what I wanted. I treated it like the summing up of the evidence presented to the jury and a job interview combined. I had everything written down, my notes and questions for Lemtrada and all the others there in nice concise bullet notes so they were easy to scan and read and cross off when they'd been covered (cog-fog meant I needed those rather than my defective memory)
Were there any difficulties in accessing Lemtrada once you’d made your decision?
None at all, relatively straight forward to be honest. A chest x-ray (YAY I don't have TB) Bloods - lots of bloods (YAY I don't have AIDS or Hepatitis either) I'd had 2 lumbar punctures recently but they are not always required, MRI - full brain and spine (1hr 40mins in the machine - didn't have a headache when you went in - do now :-) ...) Lots of peeing into teenie tiny pots always wash your hands boys and girls xx Then in I went - all rather straight forward
My honesty at saying I'm a type A control freak who wants to fight and is arrogant enough to think I will win is apparently 'refreshing'
So either they will think I'm a total head case and I'll end up on the cutting room floor, or I talked up a storm and poor Stephen didn't get a chance to write it all down so here's the clip notes Stephen xx


I'm still germ free, I'm back at work too in my quarantine facility (the glass video conference room at the end of the building) fatigue free, I can still feel with my legs and arms and JOY OF JOYS - I don't know how I missed it, but the bathroom panic situation seems to be more under control right no (please *insert deity of your choice* if everything else regresses a bit don't take this away from me)


We now have confirmation Ian's funeral will be June 24th at 12:30 so some time to prepare, some time for the rawness of the grief to lose some of it's edge. Just time


Love and plague free hugs to you all xxx

No comments:

Post a Comment

Wedding things - ours and other peoples

 Quick update on life, we had out wedding anniversary over the weekend - a very lovely meal was enjoyed at the Italian in Newbury that is no...