Anyone with Hereditary Spastic Paraplegia?

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  • stillstanding
    stillstanding Online Community Member Posts: 7 Connected
    A while since I posted. My initial diagnosis of HSP changed about a year ago. Genetic tests showed no known HSP genes. My consultant therefore believes it is Primary Lateral Sclerosis, one of the several Motor Neurone Diseases, fortunately one that is not life-shortening. The symptoms are virtually identical to HSP. 

    I'm 4 years since first having balance and walking issues. Now I've given up walking with sticks due to loss of confidence and use rollators and an electric wheelchair. My speech was affected from a year ago and now it's very difficult to make myself understood. Fortunately I managed to do "voice banking" while it wasn't so bad.

    One "advantage" of the MND diagnosis is access to my local MND clinic which is superb. At every 3 monthly visit they begin by determining which specialists to see and they are all there - consultant, SLT, OT, neuro-physio, dietitian etc. The local branch of MNDA are being very supportive too.
  • Rebecca_de_Winter
    Rebecca_de_Winter Online Community Member Posts: 24 Contributor
    Hi, well since my last post in 2020, we have not moved forward, backwards or sideways at all! My husband sees the neurologist for five minutes once per year and to be honest it takes him longer to walk to the consulting room than he spends in it! We are less than impressed. He has had zero input, no physio, no medication, nothing, nada. The neuro usually comments “Yes you do look worse than when I saw you last, I’ll see you next year.” Nothing is ever suggested or offered.
    So we are travelling down the country to try out a Mollii suit which may or may not help, let’s just hope it does - it’s not cheap, you can find it via Google - but if it does work it will be better than what we have been offered via the NHS, which is nothing. Keep smiling. 🙂 
  • stillstanding
    stillstanding Online Community Member Posts: 7 Connected
    That's terrible compared to the support I've had for HSP. Are you in contact with the support group, they are great! https://hspgroup.org/
  • millano77
    millano77 Online Community Member Posts: 17 Connected
    stillstanding said:
    A while since I posted. My initial diagnosis of HSP changed about a year ago. Genetic tests showed no known HSP genes. My consultant therefore believes it is Primary Lateral Sclerosis, one of the several Motor Neurone Diseases, fortunately one that is not life-shortening. The symptoms are virtually identical to HSP. 

    I'm 4 years since first having balance and walking issues. Now I've given up walking with sticks due to loss of confidence and use rollators and an electric wheelchair. My speech was affected from a year ago and now it's very difficult to make myself understood. Fortunately I managed to do "voice banking" while it wasn't so bad.

    One "advantage" of the MND diagnosis is access to my local MND clinic which is superb. At every 3 monthly visit they begin by determining which specialists to see and they are all there - consultant, SLT, OT, neuro-physio, dietitian etc. The local branch of MNDA are being very supportive too.
    I had no markers on the HSP gene testing but my nuero still reckons that I have HSP. 
    Unfortunately my nuero has recently retired and I don’t like his replacement. I missed my last appointment as I forgot about it and never had a further appointment sent so will need to contact them as my mobility and pain has increased. I also have serious bowel issues and slurred speech. 
  • wol139
    wol139 Online Community Member Posts: 22 Listener
    Hi. Yes make that appointment. 👍🌼
  • wol139
    wol139 Online Community Member Posts: 22 Listener
    The waiting games awful on mri results.  🙈🤞
  • wol139
    wol139 Online Community Member Posts: 22 Listener
    Each days seems to have different symptoms arising. Is that normal for poss hsp?  X
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,922 Championing
    edited April 2023
    Did they give you an anticipated time frame until you hear about your MRI results @wol139? Hopefully, you will hear sooner rather than later.

    Unfortunately, we are unable to answer medical questions. However, I can hear how difficult it may be for you to have different symptoms arising each day. 

    Please make sure you reach out to your medical team if you feel comfortable, so it is recorded if nothing else.

    Similarly, please don't hesitate to let us know if there's anything within our parameters we can do to help.

    For example, we are all here for you and are more than happy to listen to you. Do feel free to let us know how it goes for you  :)
  • millano77
    millano77 Online Community Member Posts: 17 Connected
    well well I actually remade the appointment and due to waiting times only got seen last month. 
    I have to admit that after my first visit with my new neurologist my opinion of him has changed. 
    My muscle mass is deteriorating and mobility and pain is getting worse. 
    Trying to get an appointment with my doctor to discuss pain meds, I’m currently on 30/500 cocodomol and it seems to do nothing at night. I am currently getting about 3-4 hours sleep due to the pain and restless legs. 
    My spasms/tremors are worse. 
    I’m getting referred back to a few different departments but the waiting times in Edinburgh are a nightmare. 
    Hope everyone is doing ok. 

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