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
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.


  1. I am almost 58 and was diagnosed with SPMS eight years ago which by definition must mean I was once RRMS. That would be when my gp wasn't taking me seriously and telling me there was nothing wrong.

    However the outcome for me is the same as you (except I deny being a moaning old git!)

    Steady deterioration, disinterested neurologist, no cure, no treatment and definitely on the MS Scrap Heap.

  2. Dear Don,
    Shove over and make more room on that scrap-heap for another old git!!
    l am now 66 - and have been battling to stay on my feet with PPMS for 32yrs. My mobility now is not the MS - but arthritis caused my abnormal wear and tear from struggling to keep going. l have had a new hip and knee - so doing as much ~Pilates/Exercise/Sports Massage as poss in the hopes of improving my lot. Core strength is improving - but muscles and ligaments very tight still. l need my rollator to keep me upright - which is much safer then a walking stick as it keeps you upright and stays put - no clattering to the floor when you let go of it. Also, l can carry lots in the carrier part and place a tray with my food/mug on the seat. Tizanidine and Baclofen were my worst enemies. They made me feel very weak and feeble - cabbage state - and l would have needed round the clock care and a wheelchair. We have enough problems coping without the dreadful side-effects of these drugs - none of which were intended for MS use - but for Epilepsy/Bi-polar/ HIV/Parkinsons/Cancer - Never seen a MS Nurse or a neuro who knows anything about MS - so it is a Postcode Lottery! l stick to LDN - MSSentials vitamin/mineral supplement/ Vitd3/Vitb12/Magnesium/Aspirin and a gluten-free diet. And try not to sit down - keep moving.

  3. Thanks guys I love it when some one replys to my jottings. I have given in to each stage of movement, one stick two sticks one crutch two crutches etc but now at 58 sit her all day pondering how did this happen? Still could be worse I could be reguarded as living in absolute poverty OHH I AM. well for someone who is in poverty Iaint doing to bad am I?


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