Progression of disease

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  waddles1 | published 4 months ago | Originally written in English Progression of disease

  Hi my name is Bev, I live in Melbourne, Australia. I was diagnosed with HSP in 2005 and have so far been very lucky. I walk unaided but with a slight stiff legged gait, I do not need any aids. Since being diagnosed I don't seem to progrssed much, I take oral baclofen 40mg daily and that seems to help with the stiffness. My sister who also has HSP walks with 2 canes and has had spinal fusion surgery for a trapped nerve. Just curious if anyone else is like me? I feel like a pretender when I meet other sufferers.
  4 replies to the topic — see all replies

  • 
    fernando published 4 months ago | Originally written in Spanish

    Hi Bev, Have you contacted with the Australain HSP Research Foundation (www.hspersunite.org.au/)?
    Your case is similar to many others HSP sufferers, as my son. He is living independently, with a normal work, and taking 30 mg of baclofen daily. Till now, he do not needs any aids.
    You know, every HSP case, is a different one!!!
    Regards
    Fernando (from Spain)
  • 
    waddles1 published 4 months ago | Originally written in English

    Thanks Fernando,
    Yes I am a member of the Australian HSP foundation and have met a few of their members. Just thought it would be interesting to communicate with international HSP's. Yes, I know every case is different and so far I have been very lucky. I don't feel like I have gotten worse but other people notice that when I am tired I drag my feet more.
    Thanks for your reply,
    Bev.
  • 
    justin77 published 3 months ago | Originally written in English

    Hi Bev, my daughter (3yrs old) and I were diagnosed only 3 months ago with HSP. I too live in Melbourne, is there much of a support group here?
  • 
    dave published 3 months ago | Originally written in English

    hi im new to this forum and its my first post.

    I have been told i have hsp but it is very mild at the moment , all i suffer from at the moment is painful and stiff legs and lower back. I have refused to take any drugs so far and try to mannage the pain on my own (makes me a grump sometimes).

    The biggest problem i have comes from my feet which have deformed (pes cavus) quite bad , i have orthotics but my feet kill me as im an electrician and on steps or ladders or on my feet all day , when i get home or at weekends my wife gets angry as i just want to sit or sometimes lie down all day.

    Anyway id like to know if anyone else has the same problems as me because whenever i look up the disease i can only see people who have it in a terrible way and wonder if i even have the same thing(even after 10years of testing)

    btw im from the uk and have a 3 year old son with no symptoms (i had symptoms at age 4 with pain in feet and shins at night anx walked with feet inwards)