The power of words....
This photo shows you just how cold New York was in February 2015 - the turning point in my MS journey
“But if thought corrupts language, language can also corrupt thought.” George Orwell
The locum...
Hopefully you have read my previous post that has taken us to this critical point in my MS journey. In April 2015 after our trip to New York, we went to meet with a neurologist. The lady consultant I was meant to meet was unfortunately unwell so we were met with a young locum consultant who didn't look long qualified. Our purpose for visiting him was to see if there would be a risk to my body if we were to have another child. I know that I said MS wasn't a key part of my life but as with anything it was there, lingering in the background, not surprising given I had my first relapse after my son was born, I wanted to investigate the risk if I was to have another child.
You have an MS gait and I think you have progressed MS
I remember very clearly the first thing the locum consultant said to me, which was you are walking with an MS gait. This was news to me, I had never really considered how I walked. At this point my husband pipes up that he always thought I walked funny because I was short (no words). His next words that stuck very clearly in my mind was 'I think you have progressive MS' - excuse my language a moment but WTF!! As far as I was concerned, MS had not really had an impact in my life to date. I was walking fine, clearly this doctor was making very quick judgments. At this point, I was ignoring memories of tripping over on occasion or struggling to stay upright when drunk and dancing - surely alcohol induced! Anyway they say words are very powerful and how right they are, it's almost as if from that moment onwards I became more aware of my walking and combined with visions of being progressive and ending up in a wheelchair permanently accelerated that decline within weeks... I remember leaving that meeting feeling as if my life was over. I was booked to have an MRI and a meeting with a local MS nurse and off I went. A ten minute meeting that changed my life....whereas I am sure that locum had no idea of the impact he had on me.
I met with my MS nurse a few weeks later, she was lovely and one of the first things she said was that he should never have told me that. Without any evidence, without going through all my medical records (which he didn't) and without having my MRI he was not in a position to label me as anything. I really hope someone fed this back to him so he didn't do this to other people. It wasn't just labelling me as progressive it was the way he said it - so laidback in the same way he might offer you a cup of tea... did he not realise the impact these words would have?!
A month or so after my MRI scan I received a letter which didn't really make any sense to me and didn't give me any real insight into my MS situation. All I do know is that during this time my walking had deteriorated massively. It was almost like he had casted a spell over me. I had another appointment booked in the October with the original neurologist so I just had to wait until then and try and put thoughts of wheelchairs to be back of my mind. October came and also a letter saying my appointment had been postponed until January - seriously I love our NHS but do they not understand how torturous the waiting is for people in situations like this. I needed answers. In January they contacted me again to say it was being move again until February. I think I broke down in tears at that point, no one should be made to wait that long. I finally met my consultant at the end of February 2016 - almost a year after seeing the locum. My walking at this point wasn't great but I was still walking unaided just really badly at times.
I'm sorry, we, the NHS, have let you down.
We walked into that appointment and the first thing she says to me is I am sorry, we, the NHS have let you down, I have been going over all your medical records and we should have seen you years ago... Was I angry? Yes, not with her and I was only angry for a short while but it is what it is and as I've said before 'everything happens for a reason'. She then proceeded to tell me that she believed I wasn't quite progressive yet and there was a window of opportunity to have some treatment.
Long story short, I started Lemtrada in May 2016 (an immune suppressant treatment to help get rid of the cells which they think may carry the MS - although let's face it they don't really know!). I had two years of Lemtrada and during that time my walking still declined but I had no new lesions and therefore no new relapses. During this time I also learnt more about MS and the impact of stress. I also looked long and hard at my life to date and realised that even going back to my teen years there were signs of the MS in action. I recall working at KFC and having pins and needles running up and down my legs when standing all day - most likely the MS. It's funny how you can start to piece so many things together. During this time my consultant kept offering my Baclofen to help with my walking and I kept declining - I didn't really want to add drugs into my body. I will come back to Baclofen and other drugs in another post as I want to share those experiences on their own.
I no longer care what you label me as!
I could write for hours and I don't want to do that so this last paragraph is my summary of consultants. Sadly my consultant left in the summer of 2017 however a year before that after my first round of treatment I saw her and said my walking was worse. She scheduled an MRI, I will never forget the day she wrote to me with my results with bold writing she had put that my MRI showed that I was NOT progressive. I broke down in tears... I had lived with the fear of being progressive for 18 months with the locum's words constantly in my brain, it was amazing to have that in writing and at the time it was such a great feeling. 4 years later and my view on consultants has changed. I saw two consultants after her - the first told me again I was progressive after five minutes of meeting with me and the 2nd (my current consultant) says I am most likely in the grey area between relapsing remitting and secondary progressive. My thoughts? I don't actually care what you label me as I've learnt so much since 2019 when I joined The MS Gym and my life changed again (for the better!) and that's another blog post I need to write next...
#taopatches #taopatch #multiplesclerosis #ms #health #neurologicaldisease #autoimmunedisease #livingwithms #themsgym #trevorwicken #osteopath #successstories #newyork #winter #relapse #msrelapse #lemtrada
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