I wondered if you could point me in the direction of how to get a diagnosis of HSP? If anyone has one and or are in the same position as me. I am seeking answers.
I have an extremely rare chromosome duplication with very little known about it. I have had a look at some research papers and there was one case of my gene causing HSP. I know so many of the conditions are so similar but I fit nearly all the criteria for HSP and am now a full time wheelchair user as my legs no longer work (basically they are paralysed). I definitely have Ataxia and am wondering if I could have HSP on top.
All I get from medical professionals is you are very rare and there is no treatment even if we did know more its frustrating and with it being degenerative if I could find a route cause that would help alot.
Thanks in advance.