SPMS

Everyday living
1

Hello, seven years ago I went straight to a diagnosis of SPMS which obviously by definition means I must once have been RRMS, that would be all those times I saw my gp with odd symptoms when he kept telling me there was nothing wrong! Why don’t they at least give us credit for knowing our own bodies? However, I digress, I just wondered how many more of you went straight to SPMS, I have come across a few already. Hope you are all having a good day.

2

Hello;

23 years ago my GP said there was no need to worry and that I should keep playing 5 a side and cycling, swimming etc. I wasn’t diagnosed until four years later. Yet he is a decent GP and has been really good with my aging parents. It just shows you how little anyone, including the “experts” actually understand!

Have a good weekend.

3

Hi I went straight to SPMS about 10yrs ago, asked my MS nurse how i missed out the first stage, she did explain, but i have forgotten how they new it was SPMS, but looking back over the years,some things are now explained (to me) .

Sue

4

Hi, i too was diagnosed as SPMS almost straightaway. it was becuase they kept saying there was nothing wrong with me xxx

5

Hi.

I was first diagnosed in 2004 and told it was PPMS. In 2007 my diagnosis was changed to Progressive Relapsing MS as I was having noticeable relapses that weren’t consistent with PPMS, but my progression wasn’t consistent with RRMS!!!

By 2010 my diagnosis had changed again to SPMS, which I found rather confusing as I was sure you couldn’t go from PPMS to SPMS!!

As time has gone by, and looking back, I now believe I was SPMS when I was first diagnosed in 2004. I’d had several neurological ‘episodes’ throughout my life going right back to my childhood, which I now believe was RRMS, including being admitted to hospital at the age of 6 when my whole body ‘went stiff’ and I couldn’t move at all. I was in hospital for a week. I had had a similar episode like this when I was just 5 years old, but it didn’t last as long so was not admitted to hospital at that time, but I was playing outside with some local children at that time and again, my body went stiff and I couldn’t move. My playmates had to run and get my mother, who had to come and carry me home.

It’s all very intriguing.

Best wishes

Dawn