Hi all I have just, well last Tuesday been told that I have primary progressive ms and I really don’t know what to expect despite reading every bit of literature I can find. At the moment my hands are constantly pins and needles and then random patches all over of pins and needles my left knee is agony but I’m told that’s not ms but the cramp in my right calf probably is. I’ve been put on pregablin 50mg to increase to 600 over the coming weeks. Just thought you guys would be the best people to talk to.
Hello Drummerboy,
Welcome to the club you did not ask to join. The forum is a lifeline and there is a wealth of knowledge and experience you can tap.
I too have PPMS. It’s a grumbling form of MS and, for me, the worst aspect is the slow but steady reduction in my mobility. I take no prescription medication but use CBD for neuropathic pain.
I would recommend, in consultation with your neurologist/MS nurse/GP, taking a high dose of Vitamin D. I take 5000iu daily. Magnesium is good for muscle spasms. Vitamin B12 is also essential together with hemp oil or flax oil. If you have not been referred to an MS nurse, make sure you are as they are a great help.
Take a look at this thread which discusses diets and CBD, amongst other items.
If you have any questions, please post them and we will do our best to answer.
Best wishes
Alun
Thanks alun, I am waiting for my appointment with the ms nurse to be honest it’s the leg pain and cramp that’s driving me mad prior to being told it was ms I was already on morphine patches at 10mg/hr and I still get breakthrough pain my consultant said it might be the ms the go said it might not be but they agree the cramps are the ms. I’ve also had some strange things happening with my fingers on my left hand where they kind of lock together and I can’t separate them… And the tiredness is another big problem but when I go to bed I can’t sleep because I can’t stop thinking about the future and so I’m only ending up with a few hours sleep at the moment I’m hoping that will improve
Hi Drummerboy
Welcome to our gang, lots of lovely people on here, always willing to listen if you need to rant, and also offer advice where they can.
Its always a shock to be given a diagnosis, but also a relief that you are not going bonkers with strange symptoms, but give yourself time to get your head around it, take one day at a time, and above all, be kind to yourself.
Any questions, ask away, someone will undoubtedly have an answer for you.
Pam x
1 Like