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Thread: Familial Spastic Paraplegia - Newby

  1. #11
    Junior Member whity's Avatar
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    Hi Funny
    I was wondering how affected you are with your disease?

    Also, I have been told that my brother did contract the disease.

    It is my understanding that after 16wks pregnacy, the embryo can be injected and chromosomes can be checked for the disease but I was wondering if some sort of check can be done b4?

    CYA

    Andrew

  2. #12
    Senior Member lynnifer's Avatar
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    Like Sue mentioned above, you need to be evaluated by a urologist, one specializing in neuro deficits. Did you ever follow up with that? There are some great medications now that can control bladder urges and may help you with the wetting problem - Ditropan is an example although there are others.

    I think bladder care will be the least of your worries with what sounds like a progressive condition?
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  3. #13
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    As lynnifer say's, your bladder issues need to be checked out by a urologist.

    I use Tolterodene/Detrusitol xl 4mg now, with some success, at least a lot more than when I was taking Ditropan. There are plenty of alternatives, it's a matter of finding the one that works best for you. I had a full urodynamics test a few years back, which involved not taking any bladder meds for 14 days prior to the test, and even then, the results were inconclusive. Personally, my bladder issues come and go, tho' the problems are getting more frequent and worse as time passes. I'm due to see my neuro this coming Tuesday, so I'll mention this to him and hopefully, he'll refer me back to the urologist.

    You've got to bear in mind there are no hard and fast rules with HSP, there are so many variables, simply because it's a group of 30+ disorders lumped together under the HSP banner, every individual is different.

    Re wanting to have kids, HSP does not affect fertility, but if you're worried about passing it on, as Funny Walker says, the chances are around 50:50

    Ian

  4. #14
    Super Moderator Sue Pendleton's Avatar
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    It's possible with certain diseases, using IVF methods, to examine embryos before implantation. I know most of these are diseases related to specific subgroups of the population such as eastern European Jews or Mediterranean peoples. You really should talk to a specalist in genics if this concerns you because IVF to choose disease free embryos is a new science and whether FSP genes are included in those found is not in the general medical area of knowledge.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  5. #15
    Junior Member whity's Avatar
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    Shoulder Issues

    Hi there

    Thankyou so much for your replies.
    Just lately I have had some really sore shoulders. It mainly arises when I wake up; I think Im probably sleeping on them the wrong way. But due to the fact that I havent had this problem a lot in the past Im sort of doubting sleeping the wrong way.
    Would you possibly know of afix to sore shoulders.

    Cheers

    Andrew

  6. #16
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    Hi whity,

    Sorry, can't help with sore shoulders, I don't have them after sleeping, but god help me in the morning if I've slept on my back. It must take an hour before the lower back pain subsides enough for me to move around freely.

    It could be as HSP is progresing, it's showing up in the way you sleep, ie you could be sleeping the wrong way now.

    Ian

  7. #17
    Senior Member jessie.gray's Avatar
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    I have hereditary spastic paraplegia, and I had to go to several different doctors for a diagnosis. Most of them thought I had MS or muscular distrophy, so I had to have a lot of different tests done: spinal taps, nerve shocking tests, MRI's, blood tests, ect. I was diagnosed in late 2001 and was able to walk on my own with a walker up until December 2006. That's when I had to start using a manual wheelchair full-time due to the disorder progressing more.

    As for using catheters affecting sexuality and the ability to conceive, I don't think it would affect it at all. I use catheters through a mitrofanoff stoma 6 times a day and none of the doctor's I go to told me I couldn't have kids. I have 2 daughters, who both have HSP, and its no big deal.

    Go to www.sp-foundation.org This site has TONS of info on HSP and also have ways you can help find a cure for it.

    Jessie

  8. #18
    Junior Member whity's Avatar
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    Hi there,

    Its very minor but Ive always had a problem where I am unable to raise my leg to what I would consider a normal height and this is now hindering me general daily activities such as climbing steps.
    By any chance would you know of any exercises that I could conduct which would heighten this abaility?

    Thanx

    Andrew

  9. #19
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by whity
    Hi there,

    Its very minor but Ive always had a problem where I am unable to raise my leg to what I would consider a normal height and this is now hindering me general daily activities such as climbing steps.
    By any chance would you know of any exercises that I could conduct which would heighten this abaility?

    Thanx

    Andrew
    Andrew it sounds like you need to be evaluated again by a physiatrist. You can probably get some PT/OT time out of it to learn what you're doing to wake up with sore shoulders and what are the best ways to both strengthen and to preserve your leg function. Most disabilities do quite well by exercising in a therapy pool.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  10. #20
    Hi,
    is anyone with HSP is very tired all the time?
    I am always tired and need lots of sleep.
    I am not officially diagnosed, (in a process of running tests). it looks like my sister has it. all my symptoms are similar to when you have HSP., but they dont say much about lack of energy and difficulty to concentrate.
    My daughter is 11 year old- very active child. what if she gets it.
    I am frustrated and terrified.

    Liza
    Last edited by slavela; 03-11-2008 at 06:33 PM.

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