Hi. I’m wondering if there is a definitive pathway in the NHS regarding treatment for MS?
I was diagnosed with MS 13 years ago following an episode where there were sensory changes to my body from the chest down and a previous episode of optical neurosis. I had a lumber puncture which confirmed the diagnosis. In time the sensory changes eased and I’ve been left with what feels like wearing a pair on socks on my feet at all times. Through my years with MS I’d made appointments with my GP whenever I felt there was symptoms likely to be related to it however on each occasion I was usually met with a puzzled look!
To get to the point: in February of this year I had been drinking with friends and found I was unable to pass urine (very uncomfortable!) and ended up in hospital to be catheterised where my bladder was found to be at capacity (this had also happened a few years before without a follow up). Since then I’ve started intermittent self catheterisation to enable my bladder to be fully emptied to avoid the risk of a UTI. I’ve also been experiencing increasing levels of weakness in my legs and am now finding walking an distance a challenge and my balance questionable. Since my diagnosis 13 years ago I have never been approached to be offered the chance of medication to reduce relapses. It was only since the event in February that this has been finally spoken about and I am due to begin on Techfidera in a few weeks. I am also now aware that in 2015 there was a guideline change by the Association of British Neurologists and it was on hearing this that my frustration grew. I question why I was never given DMT’s before as I now face the prospect of being unable to return to my position at work (I work in the NHS).
I’m wondering if this is a common scenario for those effected by MS and if a passing comment by the GP that finally got the ball rolling perhaps tells a wider story. He had said ‘It looks like you’ve been slipping under the radar.’
Thank you for reading this.