I was looking into my medical notes and came across a letter sent to my dr when she asked him for a referel as i was not well at all.I could not believe the letter he sent to her in it he said i was showing hardly any signs of MS and that it was very benign and my lack of mobility was a surprise to him !!!he said all he could find in my notes was that i had a bit of tingleing!!!
I was diagnosed in 1992 after i was rushed into hospital for tests,they thought it might be a stroke or a brain tumour,i am pleased to say it was not.My symptoms back then were many including double vision,severe vertigo,swallowing problems.i couldnt stand unaided for weeks about 8 i think,i was completely numb all down my left side for months.i then went on to have many relapses some worse than others,some leaving me unable to do less and less.My old neuro,who sadly retired diagnosed me with secondary progressive in 2009 i agreed with him as by this time i was unable to do much at all.
I was given this neuro now who is supposed to be an ms specialist like my old one who retired,i never liked him much at all as when i told him of how i felt he never really listened and blamed it on anything BUT ms so i decided to stop going for the yearly appts with him as i felt it a waste of time.After eading my notes i felt angry as to why my diagnosis was now benign MS and not secondary progressive like in 2009.
How the heck can you go from been secondary progressive to benign MS is beyond me.I am virtually housebound these days as the effort of having to even get dressed some days is too much and has been since 2009.How is this even possible? all this has come about because i was looking for proof of my MS in my medical notes,so i wrote to this neuro and asked him how it was possible and he sticks to it that i am benign,i told him i wont be seeing him again as i dont agree with him at all.I feel as if i am living a lie and what chance will i have when my DLA changes to PIP with a diagnosis of benign MS.I have spoken to a few that have had this happen,some have been told they have not go MS at all after been diagnosed for years.It makes me wonder just WHAT is going on here.