Diagnosis confirmed, what next?

Hi Everyone,

I saw my consultant on 20th August and the diagnosis was confirmed: Primary Progressive MS.

The consultant prescribed Baclofen and told me I would be contacted by the MS nurse in three to four months time. I went home somewhat stunned as up to the diagnosis all I had was a painful, troublesome right leg, which I hoped could be fixed, and am still trying to get over the shock of the diagnosis.

My consultant seemed to think that my MS had been present for about three years but I think it could have been very much longer than that, possibly as much as twenty years, the period of time my leg has been troublesome.

During the latter part of 2017, prior to my diagnosis I was suffering from a ‘fear of walking’ phobia caused by the troubles with my leg and heavy falls I had suffered. The anxiety was so bad that I was hallucinating, in that I could stand still and feel my feet slip from under me although I hadn’t moved at all. Medication has relieved most of the phobia. At that time, pain in my leg was sometimes unbearable.

I don’t really know what to expect in the future, as if I am correct that my MS has been there for twenty years it has been quiet for most of that time apart for the troubles with my leg.

Thank you for reading folks, any comments to help a newbie would be appreciated.

Best wishes, Blazer

Hi Blazer

What a shock for you! I was diagnosed PPMS last October at the ripe old age of 66. The consultant said I’d probably had it for 5-7 years and I think that’s probably about right. The thing that got me diagnosed was a wonky left leg and the one thing that has really helped me is my neuro physio. She’s an absolute gem and I’m convinced has a magic wand as I can now walk more or less normally for at least the one 2-3 miles. As I live in the backwater of Cumbria, where I don’t think NHS neuro physios exist, I have gone privately. But it’s been worth every penny.

Try asking locally to see if there are any NHS neuro physios, or, if you can afford it, look for a private one.

Anyway, best of luck on your new journey, keep smiling and keep positive.


hi blazer follow moirah’s advice. a neuro physio is what you need. good luck. carole x