Hi, my name is Gemz66! I have HSP type 10. My medication makes me too tired. Any other options? — Scope | Disability forum
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Hi, my name is Gemz66! I have HSP type 10. My medication makes me too tired. Any other options?

Gemz66
Gemz66 Member Posts: 2 Listener
I was diagnosed with HSP type 10 after my dad finally received the diagnosis. He had been going backwards and forwards and was told he had loose leg. My mums persistence finally got him the diagnosis but as he is over 60 he receives no disability help. 
I have problems with my legs and now it’s affecting my arms. I’m also constantly tired. 
I’m still working as a TA full time but unsure how long I can do this for. 
I was wondering what medication people take as all the medicine I’ve had up to now makes me more tired which in turns makes me have less time with the family. 
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Comments

  • Tori_Scope
    Tori_Scope Posts: 7,049

    Scope community team

    Welcome to the community @Gemz66 :) It's great to have you with us!

    Thanks for telling us a little about your diagnosis and experiences so far. Are you referring to hereditary spastic paraplegia?

    In terms of medication, we don't allow medical advice to be shared on the community. I appreciate that you're looking for other members' personal experiences, however. 

    Have you mentioned to your doctor that the medication you've tried made you feel more tired, and that you'd like to see if there are any other options available to you?
    as he is over 60 he receives no disability help. 
    Would you mind explaining a little more about what you mean by this?
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  • Gemz66
    Gemz66 Member Posts: 2 Listener
    Thank you for your message. 
    In terms of my dad I meant that he was diagnosed after the age of 60 so he has no disability help with regards PIP or motorbility. 
    I’m sorry about asking for medication advise. 
    I haven’t seen  my neurologist since being diagnosed but hoping to see him in the next month or two. 
    I have been having hydrotherapy but it’s been once every 3/4 sometimes 5 weeks and I’m not sure it’s having an impact. 
    My walking has slowed down a lot and I can’t walk as far. 
    My legs also cramp at night. 
    I also find stairs hard. The last few months my hands are cramping my thump has gone stiff and I am dropping things a lot. Does anyone else have this? 

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