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Anyone with Hereditary Spastic Paraplegia?

Rebecca_de_WinterRebecca_de_Winter Posts: 19Member Connected
edited April 17 in Neurological conditions
Hi, I just wondered if anyone suffers from late onset Hereditary Spastic Paraplegia? My husband was fit and well until age 55 when he suddenly developed drop foot and other problems with walking. Our local hospital could find nothing wrong 🙄. So we got a second opinion at another hospital where they actually looked at his MRI scan and told him he had the spinal cord of an 80 year old. He was diagnosed after many tests with HSP although they still have not been able to determine which gene is involved. It now affects both legs, one arm and both eyes.

Thanks for reading. 👍

@Rebecca_de_Winter

Replies

  • Antonia_ScopeAntonia_Scope Posts: 1,783Member Pioneering
    Hi @Rebecca_de_Winter how are you doing today? Thank you for sharing this with us.

    Some of our members have mentioned HSP before; @kimdyer18 @Sealegs , hopefully more members will be able to share their experiences with you soon :)

    There's some information on Hereditary spastic paraplegia on the NHS website.
  • kimdyer18kimdyer18 Posts: 36Member Connected
    hi guys what would u like to know 

  • Rebecca_de_WinterRebecca_de_Winter Posts: 19Member Connected
    Hi @kimdyer18

    i just wondered what sort of help you get from Drs/hospitals if any. Since my husband was diagnosed, the genetics clinic has closed as the professor and her team have left. He sees his neurologist once a year. He gets no other input and sadly I can see a great deterioration in him.

    @Rebecca_de_Winter
  • kimdyer18kimdyer18 Posts: 36Member Connected
    I get physio weekly for stretches i walk with crutches use wheel medication for spasms there is hsp face book are very helpful 
  • Rebecca_de_WinterRebecca_de_Winter Posts: 19Member Connected
    @kimdyer18
    Thanks for this Kim, he has an appointment with his neurologist in June so I am going to get him to ask about weekly physio. He tried Baclofen for spasms but it caused fits. The only thing that seems to help is vaping CBD oil. He walks, very badly with two stick but I think his days are numbered unless something is done and he will need to use his wheelchair ☹️.

    @Rebecca_de_Winter
  • kimdyer18kimdyer18 Posts: 36Member Connected
    I only use wheelchair if out all day I'm hoping to go halogen I'm having a lot of spasms I only got diagnosed last year I also wear ankle braces to stop me falling 
  • Rebecca_de_WinterRebecca_de_Winter Posts: 19Member Connected
    My husband got diagnosed about 4/5 years ago, after being told there was nothing wrong with him!
    It all started with drop foot when we were out walking and progressed from there.
    It now affects both legs, his right arm and both eyes. He only has sight in one eye after a retinal detachment and macular hole.
    Ten years ago he could run up three flights of stairs and was perfectly fit. It has taken a lot of getting used to.
  • kimdyer18kimdyer18 Posts: 36Member Connected
    tell me about I used to walk everywhere with my dog symptoms started after my daughter was born she now 3 x
  • Rebecca_de_WinterRebecca_de_Winter Posts: 19Member Connected
    Oh dear, you could have really done without that at any time, but with a little one to look after, you have my sympathies. 
  • kimdyer18kimdyer18 Posts: 36Member Connected
    thanks she helps me out if I'm on fall she really gd don't think I can never work again 
  • Rebecca_de_WinterRebecca_de_Winter Posts: 19Member Connected
    Ah that is good that she can help.
    I know my husband misses work but there was no way he could carry on and I am disabled too so we just try to help each other.
    John Lennon was right when he wrote “Life is what happens to you when you’re busy making other plans.”
  • kimdyer18kimdyer18 Posts: 36Member Connected
    my husband help me too he get frustrated he wishes he could take it from me for day least I get to see my girl growing up 
  • Rebecca_de_WinterRebecca_de_Winter Posts: 19Member Connected
    Yes it must be very difficult for you to cope with. At least with my husband it is late onset and so far it doesn’t seem to have affected any of our children. 
    The geneticists weren’t able to identify the gene, so the most we know is that both parents must have carried a defective gene to have passed this on.
  • pollyanna1052pollyanna1052 Posts: 1,179Member Disability Gamechanger
    Aha! HSP! It isn`t often you see this and no-one...even health professionals have heard of it!

    I am 66 now and was fit and healthy up to the age of 45. I started tripping, stumbling and falling. It took a while for me to realise something was wrong. I saw a neuro and he suspected PPMS...my symptoms were very MS like. After being wrongly diagnosed with that for several years, I was told I had HSP!  My world uppended all over again! You`ll know what that feels like, I`m sure!

    I had a genetic test, which came back as highly unlikely! So my current diagnosis is;

    idiopathic spastic paraparesis.
     I get no input nor support from the hospital now and just have to live with it!

    I am a full time wheelchair user, and need hoisting for every transfer and have a supra pubic catheter.

    Nice to meet you! xx
  • pollyanna1052pollyanna1052 Posts: 1,179Member Disability Gamechanger
    Just updating you all. I have an appointment at The Walton Centre in Liverpool. It is a neuroscience centre of excellence.
    I am not expecting a miracle...just a firm diagnosis would be good.
    6th Nov is my appointment. Watch this space....
    Best wishes to each xxx
  • Rebecca_de_WinterRebecca_de_Winter Posts: 19Member Connected
    Good luck with your appointment, I do hope you get a firm diagnosis and hopefully some treatment. We’ll be thinking of you on 6th November.
  • pollyanna1052pollyanna1052 Posts: 1,179Member Disability Gamechanger
    My appointment has been changed to 19th November xx
  • Rebecca_de_WinterRebecca_de_Winter Posts: 19Member Connected
    I’m sorry to hear your appointment has been put back. Good luck for the 19th.
    My husband got his first appointment at the neuro gym this week. No exercises, just put a cushion between his knees when sitting and try to stop his knees collapsing towards each other when walking. He also has an appointment in January at the Pain Clinic so hopefully they may be able to help him as they have been brilliant with me.
  • pollyanna1052pollyanna1052 Posts: 1,179Member Disability Gamechanger
    \January? Flippin` `eck...that`s a long time to wait......I have heard how hard it is to get in though. xx
  • Chloe_ScopeChloe_Scope Posts: 5,443Administrator Scope community team
    I really hope the pain clinic is helpful for your husband @Rebecca_de_Winter. :)
    Chloe
    Online Community Officer
  • Rebecca_de_WinterRebecca_de_Winter Posts: 19Member Connected
    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_ScopeChloe_Scope Posts: 5,443Administrator Scope community team
    Fingers crossed @Rebecca_de_Winter!
    Chloe
    Online Community Officer
  • pollyanna1052pollyanna1052 Posts: 1,179Member 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_WinterRebecca_de_Winter Posts: 19Member Connected
    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_ScopeChloe_Scope Posts: 5,443Administrator Scope community team
    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. :)
    Chloe
    Online Community Officer
  • Rebecca_de_WinterRebecca_de_Winter Posts: 19Member Connected
    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_ScopeChloe_Scope Posts: 5,443Administrator Scope community team
    I hope things are going okay @Rebecca_de_Winter! :)
    Chloe
    Online Community Officer
  • Rebecca_de_WinterRebecca_de_Winter Posts: 19Member Connected
    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. 😩
  • millano77millano77 Posts: 1Member Listener
    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_ScopeAdrian_Scope Posts: 4,074Administrator Scope community team
    Welcome to the community @millano77. Please keep in touch and let us know how you get on with your appointment. :smile:
    Senior Online Community Officer
    Scope
  • Chloe_ScopeChloe_Scope Posts: 5,443Administrator Scope community team
    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!
    Chloe
    Online Community Officer
  • stillstandingstillstanding Posts: 1Member Listener
    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.
  • cipscips Posts: 1Member 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_ScopeAdrian_Scope Posts: 4,074Administrator Scope 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. 
    Senior Online Community Officer
    Scope
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