Anyone with Hereditary Spastic Paraplegia?

124

Comments

  • Vickymay87
    Vickymay87 Connected
    That’s the thing kimdyer18 there are so many genes involved in different types of hip. 

    All we know is that when it started to affect our arms and hands we had a complicated form ?

    there is a link between h.sp and cmt 

    do you know anyone else with hsp?
  • kimdyer18
    kimdyer18 Connected
    nope don't know anyone else I get loads of spasms now 

  • Vickymay87
    Vickymay87 Connected
    Well you know me now ???. Oh yeah I’m familiar with the spasms they are a pain literally ?. I have sharp shooting type pain too that goes straight to my toes ??
  • kimdyer18
    kimdyer18 Connected
    yeh  im  the same 
  • Vickymay87
    Vickymay87 Connected
    It can be quite annoying. So were you diagnosed recently? 
  • kimdyer18
    kimdyer18 Connected
    August 2018 
  • Vickymay87
    Vickymay87 Connected
    So a couple of years ago. Well if you want to talk about it, I’m here 
  • kimdyer18
    kimdyer18 Connected
    thanks hunni will im finding hard atm my daughter goes to school this week xx
  • Tori_Scope
    Tori_Scope Scope
    Hi @kimdyer18! I just wanted to direct you towards this post we recently made that outlines some ideas from Scope's Activities for All team on making the back-to-school transition a little easier this year. It's something that a lot of children and parents are feeling anxious about, so please don't hesitate to reach out :) 
  • Vickymay87
    Vickymay87 Connected
    @kimdyer18. You are not alone my love, my sister who also has H.S.P has a 5 year old who is going back to school on Monday. She is a little nervous also. We live in unprecedented times. Thinking of you ?
  • kimdyer18
    kimdyer18 Connected
    thanks hun x 
  • Doug1960
    Doug1960 Listener
    hi i have hsp and been diagnosed and treated in london at the royal college hospital  it nhs and very good  iv been taking gabapentine  for about 6 years now and it seems to help the spasticity im 59 and was 42 when i started to get symptoms any one need any info feel free to contact me    
  • Chloe_Alumni
    Chloe_Alumni Championing
    Welcome to the community @Doug1960! How are you doing? :)
  • Rebecca_de_Winter
    Rebecca_de_Winter Contributor
    Well my husband has finally been told which rogue gene is causing his HSP and it is SPG21. It is one of the rare ones and so far we haven’t heard from anyone else with the same one. It still hasn’t meant any treatment though.
  • Ross_Alumni
    Ross_Alumni Championing
    I'm glad they were able to figure out which gene was causing the issue @Rebecca_de_Winter, hopefully there will be the possibility of treatment going forward, it's a shame that nothing is available at this time.
  • TheKernel74
    TheKernel74 Listener
    Hi-

    I've had increasing leg/arm and (overwhelmingly) back pain for 20 or so years. Also punishing fatigue, intolerance of heat etc-essentially all the neuro goodies. Various MRI's have shown considerable Cerebellar atrophy, again getting progressively worse. I was misdiagnosed with ME/CFS in 2015, having been (finally) referred back to a Consultant I saw a fabulous Neurologist last week who is "95%" certain I have Complex Heriditary Spastic Paraplegia (Type 7).  I also have optic neuropathy, hearing loss, bladder issues-all the goodies I now understand can be associated with this condition. I am awaiting the results of a genetic test to confirm but it is almost a certainty (especially as my Father has many of the same symptoms and has again been repeatedly misdiagnosed).

    So...

    I am presently working and exercising as much as possible but it's getting more difficult. I'm new to this so really interested to hear about peoples experiences with the condition, and insights would be much appreciated.

    All the best, Dan
  • wol139
    wol139 Listener
    Hi. I’m waiting on brain scan results. Suspected complex paraparesis. It’s progressing rather quickly now. Affecting my eyes. Quite alarming.  🙈
  • wol139
    wol139 Listener
    Mine is sporadic🙈
  • L_Volunteer
    L_Volunteer Championing
    Hi @wol139. This sounds really difficult for you. Is there anything that might help whilst you wait for the brain scan results? Please don't hesitate to let us know if there's anything we can do to support you  :)
  • L_Volunteer
    L_Volunteer Championing
    Hi @TheKernel74. Thank you for reaching out to us. Misdiagnosis is never pleasant and is always frustrating.

    I am really glad to hear you have, at least, been referred back to a consultant, especially as you saw a fabulous neurologist last week who has potentially provided you with an alternative response.

    I am wishing you the best of luck with the genetic test. How are you feeling about this at the moment and would anything support you?

    Unfortunately, I do not have experiences and insights I can share with you. Hopefully, our wonderful community members will though. 

    I am here to listen, nonetheless! Please don't hesitate to let us know if anything else would help, even if that is just listening  :)

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