does anybody else have heditary spastic paraplegia HSP — Scope | Disability forum
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does anybody else have heditary spastic paraplegia HSP

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kimdyer18
kimdyer18 Community member Posts: 52 Connected
edited October 2021 in Rare, invisible, and undiagnosed conditions
hi i just been diagnosed with heditary spastic paraplegia i was wondering if there is anyone else on here that has it. also it is very rare to have thanks .
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  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
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    Hi @kimdyer18
    Im sorry no one responded to this post, how are you getting on?
    Scope
    Senior online community officer
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  • kimdyer18
    kimdyer18 Community member Posts: 52 Connected
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    hi sam im getting on ok havent worked since july getting mobilty pip universal credit esa i have gd days and bad today bad one
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  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
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    Im glad you have benefits sorted, a lot of us understand about good days and bad, I find I need to listen to my body and rest as much as I can on the bad days.
    Scope
    Senior online community officer
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  • kimdyer18
    kimdyer18 Community member Posts: 52 Connected
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    thanks hun xxx

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  • kimdyer18
    kimdyer18 Community member Posts: 52 Connected
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    has anyone got this condtion be lovely to talk to someone that knows what im going through 
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  • Vickymay87
    Vickymay87 Community member Posts: 60 Connected
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    hi hi just to let you know. I have also been diagnosed with Hereditary spastic Parapelgia. If you have got any questions, let me know and I will be happy to answer ???
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  • ttillcock
    ttillcock Community member Posts: 5 Connected
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    Hi @kimdyer18 I’m not sure if this post is too old to get a reply but I was wondering what your experience was with Hsp as I have just been diagnosed a few days ago and I’m not sure what things are available to me/ any information at all really. I hope you’re well and coping through lockdown 
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  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
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    ttillcock said:
    Hi @kimdyer18 I’m not sure if this post is too old to get a reply but I was wondering what your experience was with Hsp as I have just been diagnosed a few days ago and I’m not sure what things are available to me/ any information at all really. I hope you’re well and coping through lockdown 
    Hello, I hope you are well. You may not receive as many replies as you'd hope for on a thread this old, that's true. However, you can always feel free to create your own discussion on the subject :) 

    To do this simply navigate to the community homepage and click "New discussion" :) 

    Alternatively, I can create one for you if that would be easier.
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  • wol139
    wol139 Community member Posts: 22 Listener
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    kimdyer18 said:
    hi i just been diagnosed with heditary spastic paraplegia i was wondering if there is anyone else on here that has it. also it is very rare to have thanks .

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  • wol139
    wol139 Community member Posts: 22 Listener
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    Hi. I’ve been told by my neurologist that I have complex sporadic spastic pararaparesis. I’ve had brain scan. Waiting for results. Is yours pure or complex?  
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  • wol139
    wol139 Community member Posts: 22 Listener
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    Mines progressing too quickly for my liking 🙈
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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Hello @wol139 and thanks for sharing what's been happening with your diagnosis of complex sporadic spastic pararaparesis. You'll have to let us know when you get the results of your scan.

    How are you finding things at the moment, do you have support at home?
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    Scope

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  • wol139
    wol139 Community member Posts: 22 Listener
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    Hi Alex. I’m in limbo waiting for mri results. Been 2 weeks. Each day my symptoms are progressing.  Did you have brain scan too?
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  • ttillcock
    ttillcock Community member Posts: 5 Connected
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    @wol139 when I got my diagnosis a couple years ago I had to wait a month for my MRI result’s hopefully you get them soon now. I hope it doesn’t progress too much in the mean time. 
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  • wol139
    wol139 Community member Posts: 22 Listener
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    Hi tillcock.  My neurologist I have HSP on examination.  Did yours tell you.  Before scans ?
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  • wol139
    wol139 Community member Posts: 22 Listener
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    Told me
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  • ttillcock
    ttillcock Community member Posts: 5 Connected
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    Due to mine being inherited from my dad which he actually had no symptoms only slightly deformed feet( this is why it was not detected in me for so long) once my neurologist had seen my dad he said there was a high chance that I did have it and the scans just confirmed it. The scans are also helpful to show any damage or deterioration in your spinal cord to give them an idea on where you’re at physically. Hopefully you get some help after this. I get physio therapy and also have various leg splints that I use to help me get around especially if my legs are tired as I can trip over a lot if I have tired legs. 
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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Hello @wol139, I haven't had a brain scan no, I'm sorry to hear you're still in limbo, hopefully you'll be able to hear more soon. 

    If there's anything we can do to help support you in the meantime, please ask :) 
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    Scope

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  • wol139
    wol139 Community member Posts: 22 Listener
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    Thanks.  I guess we wait to see how symptoms progress 👍
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  • daniellemil
    daniellemil Community member Posts: 2 Listener
    edited April 2023
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    My friend has this disease! He tries to rest more and uses psychotherapy sessions and this helps him!






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