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Thread: Familial Spastic Paraplegia - Newby

  1. #1
    Junior Member whity's Avatar
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    Question Familial Spastic Paraplegia - Newby

    Hi there,
    I was diagnosed with the disease last week - or sort of diagnosed cause I wasnt the person who was referred to the dr. and the disease is genetic.
    I have always had minor problems with my legs such as sore knees and little spasms of my legs.
    My fathers side of the family has shown signs of the disease and so I had a fairley good idea that I had it.
    A year ago, I decided to go for a run and I couldnt pick my toes up high enough to complete a step. So, Id either scuff my toes or trip over.
    Just recently I have noticed that I visit the loo very regularly and on a couple of long car trips Ive actually wet myself. Just recently I have been unable to kick off my right boot as a strong feeling of either muscle or bone trauma arises.
    Im hoping that some people on here with an understanding of this problem can advise me about bladder control as I feel that I may need a catheter in the near future and I really want kids.
    Thanx

    Andrew

  2. #2
    Super Moderator Sue Pendleton's Avatar
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    Andrew, You need to see a neurologist and then he'll refer you to a neuro-urologist if needed. If you do need to catherize that does not mean your fertility is compromised. Many men with neurological problems can ejaculate. Others may need medical help to separate sperm from urine if you have retrograde ejaculations back into the bladder. Still others use the ferticare system or electro-ejaculation. And you can always freeze your sperm now for later. This is not so easy for women as eggs do not freeze well without being fertilized. But hey, get a real diagnosis first before you get too wired on what the future holds. And many can be dry on drugs alone without cathes.

    If you need help locating a good neuro just post here where you live (nearest large city is enough) or private message me or one of the RNs for help. And believe it or not you may have the hereditary disease but the urine problem may be from something else less drastic. Get back to us, ok? Glad you found us.
    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.

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    Hi Andrew,

    I was diagnosed with Familial/Hereditary Spastic Paraplegia some years ago, after seeing several neuros who were baffled by my symptoms. They could 'see' my problems, but couldn't find out the cause, but eventually I was referred to a HSP specialist who gave me the dx.

    You describe some of the classic symptoms, toe walking, ie, we try to put our toes down first when walking or running. We also suffer from the bladder problems you describe, as well as a major increase in muscle tone/spasms in the legs. Treatments can include Baclofen for the muscle tone/spasticity, and Ditropan for the bladder issues, tho' alternative drugs are available.

    Unfortunately there's no cure, HSP is progressive, tho' how far/bad it gets can't be guaranteed as everyone is different. HSP isn't a single disorder, it's one of a group of 30 (at present) known hereditary conditions, hence everybody being different. There is a genetic test available, but it can only confirm you have HSP, and even then, only with a small group of people, the rest have to put our trust in the neuros diagnosis. It is also expensive to have done.

    As Sue says, your bladder problems will not affect fertility, AFAIK, there are only two recorded cases of HSP affecting sexuality, and I'm one of them. My problems in this area are so bad, the neuros now suspect I have a secondary neuro disorder, albeit idiiopathic. In the other case, it was temporary ED problems that didn't affect fertility in any way.

    You may want to join, or at least look at, a Yahoo support group for this disorder, there's a lot of useful info there from others with HSP http://health.groups.yahoo.com/group/HSP_friends/

    Ian
    Last edited by Ian B; 05-11-2007 at 02:50 AM.

  4. #4
    Junior Member whity's Avatar
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    Question Thanx

    Thanx Sue & Ian for your replies.
    I just added that last bit in about having kids. It really is not immediately related to my bladder problem. However it is because I probably have FSP.
    I am of the understanding that if I were to have children, they have a chance of getting FSP; as the disease is hereditroy.

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    Hi Andrew,

    As I understand it, you're right, there is a chance it will be passed on, but it's not certain to be. I'm pretty sure there are members of the HSP support group I gave the link for, who have children with no sign of HSP. That's not to say they won't show signs later, I wasn't diagnosed till I was in my 40's, tho' in retrospect, I had slight signs many years earlier.

    On a side note, there is no previous history of HSP with my family, I think this is called 'recessive HSP'

    There's lots of info online, look out for any articles by a Dr John Fink in particular.

    Ian

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    Super Moderator Sue Pendleton's Avatar
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    Thanks Ian for the info on someone who has been there. As far as children and hereditary diseases you may want to see a genetics counselor now and then again in the future when you want to have kids. If genes have been identified that cause the disease sometimes using IVF you can pre-select an embryo free of the gene/s and go on from there. If that is not an option for any reason at least a counselor can prepare you ahead of time.

    Quote Originally Posted by Ian B
    Hi Andrew,

    As I understand it, you're right, there is a chance it will be passed on, but it's not certain to be. I'm pretty sure there are members of the HSP support group I gave the link for, who have children with no sign of HSP. That's not to say they won't show signs later, I wasn't diagnosed till I was in my 40's, tho' in retrospect, I had slight signs many years earlier.

    On a side note, there is no previous history of HSP with my family, I think this is called 'recessive HSP'

    There's lots of info online, look out for any articles by a Dr John Fink in particular.

    Ian
    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.

  7. #7
    Junior Member whity's Avatar
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    thanx again Sue & Ian

    Yours
    Andrew

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    Whity and others.

    For FSP go to sp-foundation.org. There is plenty of info there and a newsgroup you can join. Also Dr. Fink is very well linked to that. It is based in the US but gets members from Canada, Australia, and elsewhere. I also have FSP, has been in the family for generations although I was the first one diagnosed with it. It seems to be quite typical, this history of misdiagnosis. There's lots to learn on this website and lots of people to talk to. Where are you based? I'm in Western Canada.

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    I found this website looking for info on Bieke Biotech and its treatment with stem cells. Does anyone have any idea whether this treatment might be applicable to hereditary spastic paraplegia?

    By the way whity, for most HSP/FSP types the chances of passing it on to offspring is 50:50 -the same chances for having a girl or boy. That's for most but not all HSP types. Find out more at sp-foundation.org.

  10. #10
    Junior Member whity's Avatar
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    Hi
    Issues that Ive been wondering about lately are that one day I may require a cathetor and what sort of process would I need to go through and or is there an alternative.
    Also, I desperatley want to have kids. So, I was wondering what options I would have.
    Thanx

    Andrew

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