Anyone with Hereditary Spastic Paraplegia? - Page 2 — Scope | Disability forum
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Anyone with Hereditary Spastic Paraplegia?

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Comments

  • Rebecca_de_Winter
    Rebecca_de_Winter Community member Posts: 24 Courageous
    Thanks Pollyanna and Chloe, he has been waiting since July, so it is quite a wait but there is a high demand because they are so very good. I hate to think where I would be if not for them, so I just hope they can help my husband to the same degree.
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
    Just been re-reading through this thread re HSP.

    16 days to my appointment now.
    How is your hubby doing Rebecca? xxx
  • Rebecca_de_Winter
    Rebecca_de_Winter Community member Posts: 24 Courageous
    Hi pollyanna1052 He had another physio appointment and was exercising for 1 and 1/4 hours! His left side was fine but his right side is where all the neurological connections are basically shot so the physio noticed he was having a lot of problems. The following day he couldn’t walk at all! :open_mouth: so he’s having to get back into things gradually. Sometimes I don’t think the ‘professionals’ know enough about HSP to be disseminating Information.
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @Rebecca_de_Winter, it sounds like they really pushed your husband! How is he doing now? I hope he's been able to get some rest. :)
    Scope

  • Rebecca_de_Winter
    Rebecca_de_Winter Community member Posts: 24 Courageous
    Thanks Chloe, he is coping. He’s been getting on the exercise bike and doing the leg lifts but I can’t say we’re seeing any improvements yet. He sees them again at the end of the month.
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    I hope things are going okay @Rebecca_de_Winter! :)
    Scope

  • Rebecca_de_Winter
    Rebecca_de_Winter Community member Posts: 24 Courageous
    No change thanks @Chloe_Scope. We had our flu jabs on Tuesday and the nurse mentioned that one of his blood tests had come back so the doc wants to see him next week, not sure what that’s about. I’ve been to physio today and come back with exercises but won’t be having any manipulation because of osteoporosis, just in case of any broken bones. I ‘m feeling a bit under the weather but it’s probably just the flu jab. ?
  • millano77
    millano77 Community member Posts: 9 Connected
    Hi there,
    I have recently been diagnosed with this condition after 4 years of knee pain and difficulty in walking. 
    I got referred to Neurology and my neurologist, who I’ve been seeing for years due to being a migraine sufferer, was able to tell me what was going on after a few tests and reading my notes from other departments. 
    Just now it is only affecting my legs and waiting on an appointment with the genealogy clinic. Should be about January or February. 
  • Adrian_Scope
    Adrian_Scope Posts: 10,935 Scope online community team
    Welcome to the community @millano77. Please keep in touch and let us know how you get on with your appointment. :smile:
    Community Manager
    Scope
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Sorry to hear that @Rebecca_de_Winter, I hope you're starting to feel a little better!

    Welcome to the community @millano77. :) I hope your appointment goes well!
    Scope

  • stillstanding
    stillstanding Community member Posts: 7 Connected
    I've been recently "diagnosed" with HSP. I say "diagnosed" as so far most other things are eliminated and that's what it's looking like. I managed to get type 2 diabetes into remission last year after losing a lot of weight, and have enjoyed walking more. Then about a year ago I started tripping and stumbling with my right leg. I've been exercising regularly at the local gym this summer but after an initial improvement its been downhill since then. If I don't use a walking stick I walk like I'm drunk! My interest in the forum is understanding how the condition will continue and the future challenges I'll face.
  • cips
    cips Community member Posts: 1 Listener
    Hello guys, hope someones still active :) 

    I found this thread by a random search and i hope all of you are good or better at least! :D 
    This is also my first post on this site.

    I am a 25 year old, developer from Romania. I have read your experiences but i am not sure if i "fit in" here!
    I know i have paraplegia but its on my arms too. In my native language its spelled differently, something like 'tetraplegia' 
    I am having huge leg pains especially on the hips and feet accompanied by feelings of burn spikes, like an electrical injury, all my movements are very unbalanced and my legs do sudden moves on their own when im trying to sleep in my bed, same as being electrocuted. Lately the bottom of my spine hurts as well.
    I did alot of genetical tests but nothing so far, the neurologist is suggesting that i have multiple neurological based diseases. Did any of you experienced something like this?

    Sorry for my grammar mistakes
    All the best to all of you :D, Ciprian
  • Adrian_Scope
    Adrian_Scope Posts: 10,935 Scope online community team
    Hi @stillstanding and @cips! :)
    It's great to have you both here on the community. I hope you'll both find the help and support you're looking for. 
    Community Manager
    Scope
  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
    Hello....so we do have a few members with HSP! The medical profession are either totally unaware of HSP, or know a little. There are some specialists who I have met along the journey.

    I am being investigated all over again soon. I saw a new neuro in Liverpool on Tuesday. He is going to take me in (Liverpool) as it`s a long trip there and back from home ie 4 hours.

    Fingers crossed I`ll get that elusive diagnosis after 20 years.
  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
    millano77 said:
    Hi there,
    I have recently been diagnosed with this condition after 4 years of knee pain and difficulty in walking. 
    I got referred to Neurology and my neurologist, who I’ve been seeing for years due to being a migraine sufferer, was able to tell me what was going on after a few tests and reading my notes from other departments. 
    Just now it is only affecting my legs and waiting on an appointment with the genealogy clinic. Should be about January or February. 
    Hi, were you ever told it could be MS?
  • pollyanna1052
    pollyanna1052 Community member Posts: 2,032 Disability Gamechanger
    I've been recently "diagnosed" with HSP. I say "diagnosed" as so far most other things are eliminated and that's what it's looking like. I managed to get type 2 diabetes into remission last year after losing a lot of weight, and have enjoyed walking more. Then about a year ago I started tripping and stumbling with my right leg. I've been exercising regularly at the local gym this summer but after an initial improvement its been downhill since then. If I don't use a walking stick I walk like I'm drunk! My interest in the forum is understanding how the condition will continue and the future challenges I'll face.

    Hi, were you ever investigated for MS?
  • stillstanding
    stillstanding Community member Posts: 7 Connected
    You are right that most of the profession haven’t heard of it. My dentist summed it up when he said he’d heard the words before but not together. I’m thinking that if I’m this lucky getting a rare condition I should start buying lottery tickets.
  • millano77
    millano77 Community member Posts: 9 Connected
    millano77 said:
    Hi there,
    I have recently been diagnosed with this condition after 4 years of knee pain and difficulty in walking. 
    I got referred to Neurology and my neurologist, who I’ve been seeing for years due to being a migraine sufferer, was able to tell me what was going on after a few tests and reading my notes from other departments. 
    Just now it is only affecting my legs and waiting on an appointment with the genealogy clinic. Should be about January or February. 
    Hi, were you ever told it could be MS?
    Hi Pollyanna,

    I was tested for MS and that has been ruled out. 
    My neurologist done quite a fe tests on me and after speaking to a colleague, a professor in genealogy they have both agreed this is what I have. 
  • stillstanding
    stillstanding Community member Posts: 7 Connected
    I've been recently "diagnosed" with HSP. I say "diagnosed" as so far most other things are eliminated and that's what it's looking like. I managed to get type 2 diabetes into remission last year after losing a lot of weight, and have enjoyed walking more. Then about a year ago I started tripping and stumbling with my right leg. I've been exercising regularly at the local gym this summer but after an initial improvement its been downhill since then. If I don't use a walking stick I walk like I'm drunk! My interest in the forum is understanding how the condition will continue and the future challenges I'll face.

    Hi, were you ever investigated for MS?
    No, this is the first diagnosis, based on the neurologist assessment, blood tests and MRIs of spine and brain.

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