Does anyone have HSP?

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paulm32
paulm32 Online Community Member Posts: 3 Listener
edited January 2020 in Rare, invisible, and undiagnosed conditions
Hello im paul. I got diagnosed with HSP late last year but never really heard of it before. It began when i was walking with a limp until after a MRI my other foot went stiff and now im walking on the tips of my toes. It just gets worse. Iv lost my job and my social life dont exist anymore. Has anybody else had this? Im waiting to see a neurologist to test me to see what form it is. I just dont know what to expect for the future. Thanks

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  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @paulm32 and a very warm welcome to the community. :)

    I'm sorry to hear your health has been getting worse and you have lost your job and social life, this sounds extremely difficult to manage. Do you have any support around you?

    @Nancy8597 has spoken on the community about HSP here: https://community.scope.org.uk/discussion/67443/has-anyone-has-heard-of-noscapine-as-a-potential-treatment-for-hsp-or-has-had-any-succes?

    I hope the appointment with the neurologist can be helpful, please do let us know how you get on.
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @paulm32, how are you doing at the moment?
  • paulm32
    paulm32 Online Community Member Posts: 3 Listener
    Hiya. This was another account I must have made haha I actually got diagnosed with HNPP about a year ago and waiting for a date for my muscle surgery thanks for asking
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,611 Championing
    paulm32 said:
    Hiya. This was another account I must have made haha I actually got diagnosed with HNPP about a year ago and waiting for a date for my muscle surgery thanks for asking
    Hello and thanks for the update, glad to hear that you have been able to make some progress and hopefully you receive the date for the surgery soon!

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