Hi there. Three months after I had my diagnositc appointment with my neuro I have finally got my letter from him and he has confirmed that he thinks I have SPMS rather than PPMS. Actually he says I have what is sometimes called SAPMS. This stands for Single Attack Progressive MS. I had some numbness of both legs up to my waist back in 1990 which, in retrospect, he now thinks was probably an acute partial transverse myelitis (although of course we will never know for sure). I went to my GP at the time though wasn't particularly alarmed; I could still walk, go to the loo and there was no pain - it just felt a bit odd. My GP said it was a trapped nerve so I thought no more about it especially as it disappered within a week. Then..... NOTHING for over 15 years. Even when I started to get symptoms they were fleeting and subtle so it took 5 years before I saw a neurologist. Of course as he says in his letter, the distinction between PPMS/SPMS/SAPMS makes b****r all difference as there's not much they can do for us. Well I summarise a tad, what he actually says is 'the distinctions are academic as the prognosis and treatment situation with the various forms of progressive MS are not greatly different."
Just wondering if you will still have me in your club as I am not a proper PPMSer?
Also wondering if anyone else's progressive MS has followed a similar course?
Oh and if you're wondering why it took 3 months for the consultant's letter to get to me - when I called her to chase it up, his secretary let slip that the clinic transcripts, which are sent to INDIA (!?!) to be typed, up had gone astray so they had to be dictated again. His note-taking must be better than mine - if I took 3 months to type up a client's notes, they would make no sense.