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.
Hi Hilary, of course you are welcome on this board. Welcome. Can’t say I’ve heard of anyone with your type of MS, but it is a strange beast indeed, showing itself in a different form with everyone. Even those of us with a straightforward PPMS diagnosis do not all have the same symptoms, progression etc etc.
I think I speak with everyone on this elite little board that all progressive MSers are welcome here. I hope you find the info and advice useful and the friendship and support can really be a lifesaver.
India! I have a friend who used to be a legal typist at a solicitors, but they send most of their stuff to be typed in India now (either audio dictation or scanned notes). It’s incredible really. No wonder there are so many people out of work.
Take care and look forward to seeing you on here again,
Oh and neuro’s secretary allayed my fears about my personal data spinning around the Indian sub-continent. Apparently data is de-personalised and only matched with name and address on return. But as you say, shame that public sector work being outsourced when so many out of work.
l am SPMS - have been for 30yrs. Never had the RR type. So l flit from one forum to another - but it does not matter. l did look at the GLAMS forum - me thinking it was for people from Glamorgan!!! - ls there a forum for Batty Old Birds!!
Perhaps l shall start my own.
lts the Young Peoples Forum that l find so heartbreaking - some of them are very young - many still trying to study - not knowing how there illness is going to effect their future.
There is a new website called ladieswithlesions - anyone looked at it? l think its on facebook -