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    Old 07-27-2005, 09:44 PM   #1
    jsides2000
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    Question spastic paraplegia!!!

    Just diagnosed with Spastic Paraplegia -- just curious if anyone here has it!
    js

     
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    Old 07-29-2005, 06:34 AM   #2
    feelbad
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    Re: spastic paraplegia!!!

    Just what exactly is this?What symptoms do you have?I have never heard of this before.I do suffer from some pretty intense spasticty in both legs due to a spinal cord injury caused by surgery.Just curious.Could you please enlighten me?Thanks,Marcia
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    Old 07-31-2005, 11:07 AM   #3
    jsides2000
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    Re: spastic paraplegia!!!

    I was undiagnosed for a year then just recently diagnosed. My symptoms are clonus, tremors, and leg stiffness especially when , anxious,cold or nervous. All my problems are in my legs -no upper body problems. It makes it a little difficult for me to walk sometimes and I fall every now and then. They first thought it was MS or stiffman syndrome but once they ruled out all the other diseases thats when they diagnosed me with this. Any similiar symptoms?

     
    Old 08-09-2005, 06:45 AM   #4
    UKlass
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    Re: spastic paraplegia!!!

    Hi there.

    I have a condition called Hereditary Spastic Paraplegia - I wonder if it's the same? Did you have a blood test to confirm this or is there anyone else in your family with the condition or symptoms?

    I was diagnosed earlier this year after I heard one of my cousins had it too - I had been through all the MRI, LP EMG etc and they found nothing there. I still can walk unaided, but stiffer and slower and it don't look too pretty!! My condition has recently progressed quite noticably and i'm having a bit of a hard time adjusting - just can't seem to walk 'naturally'. I did read a while back that some quite promising research had been done on this, but it will be years before we see anything come out of it, if at all, but you can but hope I guess.

     
    Old 08-10-2005, 07:23 AM   #5
    feelbad
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    Re: spastic paraplegia!!!

    UK i would get copies of all of those tests you had done that said they "found nothing there"?And really see just what "nothing" means.Trust me, docs do NOT tell you everything that is found on those tests.plus the results of the tests(the radiologists report?)is totally HIS/HER interpretations of the films not nessescarily what is actually there.And those interps are totally dependant on the knowledge and experience of the radiologist nothing more.i found out some really rather dramatic issues were going on in my spine that my doc called nothing that really tuned out to be a major something.Just take a good look at all of those reports for yourself so you know what they called nothing.There may well be nothing there but in most cases,even if there is actually something wrong in your spine, if that particular doc does not think that the particular issues would explain the symptoms you are having, they don't even tell you about them at all.It wouldn't hurt you to get ALL of your medical records from all docs and all facilities where you have been treated or hosps that you stayed in.Reading all of your docs clinic notes that are made after each visit will really help you to see just what your doc thinks about you and your issues.Mine all were quite the eye openers.i have every single medical record of every single place and evry docs office that has treated me in the past five years.Marcia
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    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 08-11-2005, 04:44 AM   #6
    UKlass
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    Re: spastic paraplegia!!!

    Marcia,

    Thanks for your reply and advice but I had a positive gene test result that confirms my diagnosis. With such a condition you would not expect to find much on MRI studies as the molecular mechanism of the condition disturbs the neural transportation mechanism within the nervous system which would not be visible on MRI studies. Prior to the genetic test I had a very thorough work up by the neurologist and orthopaedist and nothing remotely unusual was found. I have read that in very many cases HSP can only be detected through presence of a mutated gene. It is my nervous system (spinal cord) that's causing the trouble not the skeletal bit (actual spine).

     
    Old 08-17-2005, 10:44 AM   #7
    jsides2000
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    Re: spastic paraplegia!!!

    uklass,
    Just read your post. I think they labeled me as SP because those are my symptoms but I tested neg. with HSP although they said there are so many different genes of HSP that I probably have one that is not able to be tested----yet. But who knows really-- I just take it day by day and try to exercise as much as possible to stay strong. Curious-- where do you live!! and are you on the SPF org. website-- group chat

     
    Old 08-21-2005, 03:24 PM   #8
    UKlass
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    Re: spastic paraplegia!!!

    I'm in the UK. Yes, it does seem likely that you may have a gene that there is currently no test for - any family history? Keep doing those exercises - it's the best thing really. I've recently noticed some progression in my condition - I was walking terrible about a month or so ago but with regular stretching things have definitely improved. And no I don't use the chat on the SPF website - time difference makes it difficult - I usually chat with my cousins if I want a moan about it!!

    Take care.

     
    Old 08-22-2005, 10:10 PM   #9
    jsides2000
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    Re: spastic paraplegia!!!

    UK -- I should of known that one hee hee!! 2 other family members may have it but we are all still not sure if it is connected!!! Goodluck with everything and keep stretching. J

     
    Old 09-03-2005, 01:48 PM   #10
    Janatee
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    Re: spastic paraplegia!!!

    Hello UKlass, Just finished reading your post about the Hereditary Spastic Paraplegia.. I need your advice. I had a Decompressive Lumbar Laminectomy in 2003. I was diagnosed with Spinal Stenosis, and it was getting worse. I could hardly walk. This injury came about due to me falling OUT of a bathtub in 1990. As time went on, the tightness on the nerves, and the pain caused me not to be able to walk normal. After many MRI'S, and some time in therapy (that did not work) my only option was to have surgery. Doc said they made a pie shape cut into my disc to open up the area to relieve the pressure on the nerves. Also, they had to chisel out some bone also. After the surgery, I felt good. I thought my God, I can walk again normal. The only therapy I was to do, was to walk......At the store, at home, anywhere. After awhile I started to notice the same symptoms coming back. Leg heaviness, numbness, one side of my ankle would swell a little. When I lay down or sit down I feel better, but as soon as I stand to walk, it hurts. I have spasms bad in the morning when I get out of bed. I have to stand, my leg jumps and stiffens, then I can walk. or what you can call walking. I now walk with a cane. I contacted my surgeon, who says "this could be nerve damage, due to the fact that many years of that bone pushing on the nerve." He said this could take another year or two , if at all, for the nerves to heal... If they do , I don't know. I have contacted another surgeon for another opinion. Let me say, what they did do in surgery, has really helped me walk, BUT , I do not walk normal anymore. This leg (left one) is always heavy, always numb, and getting in and out of a car is not a pretty site, like you said. I'm only 51 years old, and I walk like someone who is 100.. What type of blood work would I ask for? I have had EMG, and MRI's what is a LP???? Have you experienced any of my symptoms?? Sorry to beat your ear about this, but would you be so kind as to write me back, or anyone who has had any of these problems. Its a mystery. Here I thought this operation would to the trick... If indeed this is nerve damage, then I need a doctor who says, Yes, thats it, and then I guess I will learn to live with what I have... Thank you, and never give up hope. janatee

     
    Old 09-10-2005, 09:56 AM   #11
    UKlass
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    Re: spastic paraplegia!!!

    Hi Janatee

    I'm not really sure that I am the one to ask about this I am no expert!! The thing I would start with is did you have any kind of syptoms before your fall in 1990 and how did the symptoms progress from then on? I had symptoms of HSP since I was about 3 years old - brisk reflexes, lack of balance and slightly less than average coordination - it didn't cause me any real problems, I couldn't skate very well and I didn't run too fast, but I never had ambitions to be a world class athlete so it wasn't a problem. At age 21 I started to limp very slightly and since then it has got worse, I can no longer run and I walk slower and stiffer now. From reading others' experiences mine is a fairly typical HSP story, apart from the fact I started to show quite early. My mother also has this condition and so have some cousins. I have also read that some people's symptoms began following some kind of trauma (accident etc).

    If I were you I would go and see a neurology specialist and leave the surgeon out of it and tell them exactly how and when your symptoms progressed. If you're not happy it's always best to get a second opinion. From what you've told me I really don't know what's wrong there, I don't know what spinal stenosis is or the surgical procedures involved. I do hope though that I've given you some info you required. An LP is a lumbar puncture where they insert a needle to extract your cerebro-spinal fluid for examination - this test is often used if MS is part of the differential diagnosis.

     
    Old 09-21-2005, 10:16 AM   #12
    mkg99
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    Re: spastic paraplegia!!!

    hi, new to this forum, and have concerns about spastic paraplegia as well. i am scheduled to have a blood test, EXPENSIVE, by the way, and will be off to a university with good neurology docs with or without the results in place. depends on which red tape gets cut first.

    my symptoms are rigid spastic legs, a constant urge to stretch, bladder and bowel control issues, and balance. not to mention a sciatic nerve that's a major P.I.A....

    i was unfortunately treated for 6 years for MS. but my new doc ran new MRI's and found no lesions or plaques in my films. with all the other auto immune's ruled out, he sprung this on me out of the blue. fun!

    i will probably be getting the baclofen pump A.S.A.P. as the oral meds are the pits! the worst part is the constant motion in my muscles. either twitching or tightening, be nice to not have to plan my route thru the house to get to the potty!!!

    Every Day is an Adventure!
    mary

     
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