Wednesday, 11 June 2014
The MS scrap Heap that is Primary Progressive Multiple Sclerosis
I don't often buy a news paper in the week it is just one on a Saturday for the television programme listings book. Yesterday was different I had got up early showered and shaved breakfasted and moaned but had got out of the house for an 11:20 dentist appointment. Well you can imagine my horror when I was informed I was a day early! The receptionist bless her littllle cotton socks popped to see the dentist who aggreed to fit me in but it might be an hour. I waited and Heather my wife popped off to get me a newspaper and a bit of shopping. Well imagine her suprise when she returned and I was sitting there wating for her to collect me. The news paper was The Times and when I got home I started going through it. The day wound on other stuff happened and I never did read the paper but this morning after a slow start I browsed through it and discovered an entire section on MS 16 whole pages devoted to MULTIPLE SCLEROSIS. How spooky is that? I just had to read what I regarded as my destiny.
Most of it was about the new medicines available now for people who suffer from Relapsing Remitting MS if only I understood that beast I suffer from Primary Progressive MS and have got progressively worse over the 20 years I have been suffering from this beast. but there on the next to last page was an article that I could relate to about a girl who in her early thirties had been diagnosed with PPMS. I had been about 38 and yes I am 58 and a moaning old git, it's compulsory to morph into one when you turn 50. The words of the post resonated with my own experiences of being diagnosed my Neurologist had the bedside manner of a house brick and it appears thing haven't changed much over the ensuing years. The last few lines really touched the nerve of how I feel about my own situation, it finished with these words
Since Disease modifying drugs are only used in relapsing and remitting MS, those with progression have few treatment options left. This means there's nothing morethat can be done - so welcome to the MS scrap heap.
Pretty much sums up how I feel about my PPMS. My GP is a personal friend but he has no idea how I should go forward, I cant get much help from my MS nurse the options are all very limited. Last week whilst trying to get my hard to move legs to work a little better I was increasing the dosage of the tizanide tablets I had been prescribed. I got up to 10MG daily and they were causing me to feel breathless and eventually to hallucinate. Needless to say I am cutting the dosage back and my legs have not shown any signs of the spasticity going so I am in need of some help but cant contact my MS nurse. PPMS continues to be the pain that makes my life interesting but I would walk away from it in an instant and not look back but until the drugs search for Pandora's box is a success it looks like me and all others with PPMS will be on the MS scrap heap.