Results 1 to 9 of 9

Thread: anyone here with hereditary spastic quadriplegia ???

  1. #1

    Smile anyone here with hereditary spastic quadriplegia ???

    hello

    i am a C5-4 but not SCI . my diagnosis is hereditary spastic quadriplegia and i would like to know if there is someone else here with this same SCD ( spinal cord disorder )

    thank you so much

    lola

  2. #2
    Senior Member
    Join Date
    May 2005
    Location
    United Kingdom
    Posts
    224
    Hi Lola,

    Yes, I have Hereditary Spastic Paralegia, tho' I still dispute the diagnosis. I'm 49 and was diagnosed some 7 or 8 years ago, after the usual routine of everything else being ruled out first. I'm lucky in that I've been told I'm unlikely to get much, if any, worse than I am at present. I'm relatively mobile, I just need a cane to get about, and although I have all the classic symptoms, I also have symptoms that simply don't fit HSP. I take 100mg Baclofen daily for the spasticity, and 1 Detrusitol XL 4mg daily for my bladder issues. I've just started a course of acupuncture on my back (slight scoliosis) which while not strictly a treatment for my HSP, has proven a great help in correcting my posture. For the first time in a long time, I'm able to stand upright again.

    My present neuro has suggested I may also have a secondary, albeit idiopathic neuro disorder, which to my way of thinking is very, v-e-r-y unlikely at best.

    I don't know if you're aware of, or even a member, but there's a Yahoo HSP support group wih plenty of good info http://health.groups.yahoo.com/group/HSP_friends/

    Ian

  3. #3

    Smile

    hi ian

    thank you so much for your post

    i have hereditary spastic QUADRIPLEGIA and i wonder if it's a type of HSP or if the two disorders are related .

    most of my body is paralyzed ( legs, feet, both wrists , left hand most of left arms and 2 fingers of right hand ) and my neurologist said my level of damage is a C5-4 and there's no way of knowing if and/or when i'll progress.

    hugs, lola
    "All that is necessary for the triumph of evil is that good men do nothing" ~ edmund burker

    c4-5 quad

  4. #4
    Senior Member
    Join Date
    May 2005
    Location
    United Kingdom
    Posts
    224
    Hi Lola,

    I guess they are one and the same disorder, but as there are 30 known (at present) neuro conditions that are lumped together under the HSP banner, I could easily be wrong. My understanding is, if the arms and hands are affected, it's what's now known as 'complicated' HSP, I've never heard of it described as Hereditary Spastic Quadriplegia before.

    I know there are no hard and fast rules for HSP, it affects people in vastly different ways, some as badly as yourself, and others like me, in a much milder way. Having said that, it does affect my arms to a certain degree, but only in as much as I ocassionally get spasms in them as well as my legs, certainly nothing too debilitating.

    Is there any family history of HSP/HSQ? As far as I've been able to find out, I'm the first case in my family. I think I'm right in saying this is called recessive HSP.

    I don't know what it's like for you, but in the UK, finding a neuro with experience of HSP is all down to luck. My previous neuro was a HSP specialist, but when he retired, he warned me the next one I saw would be unlikely to have heard of HSP, let alone treated a case. He was right, I know more about it than my present neuro. Thankfully, I'm relatively stable now, the rate of progression has all but stopped, I won't get much, if any, worse than I am at present, so his lack of experience with HSP isn't much of a hindrance.

    Ian

  5. #5
    Junior Member
    Join Date
    Jul 2007
    Location
    Vancouver, B.C.
    Posts
    22

    Hsp & Pls

    For those of you with HSP or PLS check out the website sp-foundation.org. It is filled with info and is very active, even with a newsgroup. They fundraise through Teamwalks where everyone gets together in different US cities, meets for dinners and walks or rolls through town. I've been to one in California and met many others with HSP. I've learned a lot through the website and met some wonderful people. I'm an HSP in Vancouver, Canada.

  6. #6
    Senior Member jessie.gray's Avatar
    Join Date
    Aug 2005
    Location
    Washington State
    Posts
    784
    I have hereditary spastic paraplegia, and I think both are related in some way. I was diagnosed with this disorder in 2001, and had to start using a manual wheelchair full-time in late 2006 (prior to that, I only used it part-time). I have a Quickie GP ultra lightweight wheelchair as a main chair and a Quickie Revolution chair as a backup. I progressed rather fast, according to my neurologist.

    No one else in my family had ever heard of this disorder, so the only thing my doctors can figure is that we had an ancestor who had the disorder before it even had a name.
    Because of the disorder causing a lot of spasticity in my legs and hips, I have to take 80mg of Baclofen everyday and I have to wear AFO leg braces to keep my feet flat on my footrest. The big trouble I tend to have is my feet get very cold and have diminished sensation in them. I also have to use intermittent catheters through a mitrofanoff stoma because my bladder doesn't empty all the way on its own. Its annoying, but you get used to stuff very quickly. I can't walk more than 5 steps with forearm crutches anymore, so my family and I decided it was time for full-time wheelchair use in December of last year.

    If you go to www.sp-foundation.org, there might be more information about the spastic quadraplegia you have. I know I have heard of that term before, so its probably explained on that website.

    Jessie

  7. #7
    Yes, I have HSP. I have it at the C8 level. I've had it, slowly getting worse, for decades. Been a wheelchair user for 2 years now. Didn't get diagnosed until 10 months ago.

    From what I've learned on the SPF website, HS Quadriplegia is likely either the Complex version of HSP, in which you have extra damage, or it could be PLS: Primary Lateral Sclerosis. From what I can tell, PLS is exactly HSP only it affects your upper body as well.

    I have some hand weakness, so technically, I have the complex version of HSP.

    You can find many like you at PatientsLikeMe.com. I love that site. People have all sorts of versions of these diseases. You're not alone. :-) There are lots with HSP, and PLS. Sign into the ALS group.

  8. #8
    I am also in the HSQ/PLS category. In my case, I have a mutation of SPG7, but not the one that causes HSP. Functionally, I am impaired from my feet up to my neck, including dysphagia and dysarthria.

  9. #9
    Ok, now I'm starting to wonder what the difference is between

    1) Complicated HSP,
    2) HSQ and
    3) PLS.

    I'm totally losing my back muscles, as well as the weak arms and hands. Can't sit up more than a second without a very tall back. This really isn't "paraplegia" anymore.

    What do I call it?

Similar Threads

  1. C2 complete recovery rates?
    By lorraine in forum New SCI
    Replies: 18
    Last Post: 03-31-2010, 03:34 PM
  2. Replies: 0
    Last Post: 04-08-2004, 02:42 PM
  3. Replies: 0
    Last Post: 04-08-2004, 02:38 PM
  4. spastic bladder and foley cat
    By cauteo in forum Care
    Replies: 10
    Last Post: 11-05-2002, 08:48 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •