I have lupus predominant health issues and last yr told I have hsp. No one warns you or explains anything , my neurologist through his hands in the air and said there's nothing left to do. I am becoming wheelchair bound my legs feel like cement . I go to take a step and my feet feel like their stuck. I am about to start self catheterisation because I struggle to urinate and I really can't feel when I begin and end . I always feel like pressure down in that region but never busting to go. Anyway hope the research gives up more information we need it thanks from Sydney Australia
I have what was called spastic diplegia, than idiopathic spastic diplegia, and, finally, just a couple of weeks ago, spastic paraplegia (after having my one and only genetic testing. I have been going to doctors since 1973). I have the Baclofen Pump, use a cane in each hand and a walker. I used to be able to run and even dance on stage (I had been inolved in community theatre since 1980). Now I have two leg braces as well. Every time I seem to be getting the walk back (via physical therapy) it becomes twice as worse as before. No one on either side of my family, living or dead has this. I no longer know where to go for answers.
My Dr Tells me that HSP does not worsen over time,but 15 years ago i could walk without a stick and now i cant balance or walk far i have to fall on to the walls in the house and i stopped leaving the house 10 years ago.im sure he is wrong as my condition is worsening.Is he right or Wrong about this ?
