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Thread: Charcot Marie Tooth or Progressive Tethered Cord from Spina Bifida

  1. #1
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    Charcot Marie Tooth or Progressive Tethered Cord from Spina Bifida

    Hello All!

    I was born with spina bifida, been able to walk, I've had several operations including bladder augmentation back in 1985. For the last 10 years I've had severe muscle atrophy in my left leg, I've always been able to walk, but my left leg has always been weak. My left foot is Pes Cavus, really bad "hammer claw", my left leg has a "Stork Leg" condition. Last year I had an MRI and the doctor said I have a fatty lipoma on my spine which is causing my cord to tether. Resulting in the muscle atrophy on my leg. Up until 3 months ago my condition has been stable no major changes in my body.

    I went to a neurosurgeon a week ago and asked about having the cord de-tethered but after talking to him I'll pass. Didn't seem like any real good could come from the surgery. More of a risk then a cure or prevention. He basically said my cord could re-tether do to the scar tissue. Seems like most of the damage is done already. I have to self-cath , don’t have much control over bowels, take immodium to help with loss of bowel control. Anyway…


    My concern is this: I’m experiencing severe stiffness more than normal, pins and needle sensation in my feet and legs, my hands sometimes are getting tingling in them, my right leg is beginning to lose muscle and my right foot is Pes Cavus with “Clawing”. I’ve always been a little stiff but what I’m experiencing is crazy. I can barely more down the steps with out a cane. Some days are better but for the most part I use a cane to walk. Sometimes I think is this really happening???

    At first I thought I may have Charcot Marie Tooth but my Neurologist said that my condition is a result of Spina Bifida. When I saw him last year only my left leg was affected with the “Stork Leg” and he said that CMT is bi-lateral. However, my concern is the “Stork Leg” is beginning on my right foot and leg. Plus I’m getting tingling in my hands. So since I’m beginning to get bi-lateral “Stork Leg” and tingling in my hands I’m wondering if my condition is CMT and Spina Bifida. Bi-Lateral “Stork Leg” and tingling in the hands is a symptom of CMT.

    Can Spina Bifida produce the same symptoms as CMT? Or is it just Spina Bifida progressing? I really don’t know? How can I rule out CMT and just confirm that the Spina Bifida is taking a toll on my body as I get older.



    What Kind of tests can be done?


  2. #2
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    *Bump*


  3. #3
    Quote Originally Posted by Trout Bum View Post
    Hello All!

    I was born with spina bifida, been able to walk, I've had several operations including bladder augmentation back in 1985. For the last 10 years I've had severe muscle atrophy in my left leg, I've always been able to walk, but my left leg has always been weak. My left foot is Pes Cavus, really bad "hammer claw", my left leg has a "Stork Leg" condition. Last year I had an MRI and the doctor said I have a fatty lipoma on my spine which is causing my cord to tether. Resulting in the muscle atrophy on my leg. Up until 3 months ago my condition has been stable no major changes in my body.

    I went to a neurosurgeon a week ago and asked about having the cord de-tethered but after talking to him I'll pass. Didn't seem like any real good could come from the surgery. More of a risk then a cure or prevention. He basically said my cord could re-tether do to the scar tissue. Seems like most of the damage is done already. I have to self-cath , don’t have much control over bowels, take immodium to help with loss of bowel control. Anyway…


    My concern is this: I’m experiencing severe stiffness more than normal, pins and needle sensation in my feet and legs, my hands sometimes are getting tingling in them, my right leg is beginning to lose muscle and my right foot is Pes Cavus with “Clawing”. I’ve always been a little stiff but what I’m experiencing is crazy. I can barely more down the steps with out a cane. Some days are better but for the most part I use a cane to walk. Sometimes I think is this really happening???

    At first I thought I may have Charcot Marie Tooth but my Neurologist said that my condition is a result of Spina Bifida. When I saw him last year only my left leg was affected with the “Stork Leg” and he said that CMT is bi-lateral. However, my concern is the “Stork Leg” is beginning on my right foot and leg. Plus I’m getting tingling in my hands. So since I’m beginning to get bi-lateral “Stork Leg” and tingling in my hands I’m wondering if my condition is CMT and Spina Bifida. Bi-Lateral “Stork Leg” and tingling in the hands is a symptom of CMT.

    Can Spina Bifida produce the same symptoms as CMT? Or is it just Spina Bifida progressing? I really don’t know? How can I rule out CMT and just confirm that the Spina Bifida is taking a toll on my body as I get older.



    What Kind of tests can be done?
    Trout Bum,

    Charcot-Marie-Tooth is a common (1:2500 people) hereditary disease that manifests in peripheral neuropathy. Spina bifida is a congenital (developmental) disease that results from the spinal canal not developing properly (not closing), resulting a various degrees of maldevelopment of the spinal cord.

    Based on your description of your foot, I tend to agree with your neurologist that you have spina bifida and not Charcot-Marie-Tooth. However, spina bifida should not cause problems with your hands and should not be progressive. The symptoms that you describe in your hands are more consistent with Charcot-Marie-Tooth.

    Evidence for Charcot-Marie-Tooth would be a neurological examinations indicating peripheral neuropathy, confirmed with electromyographic studies showing loss of both motor and sensory conduction in the peripheral nerves, along with genetic tests confirming the presence of the abnormal genes responsible, and of course a family history.

    There are many kinds of Charcot-Marie-Tooth diseases (Source). The problem is that we don't have any treatment for any of them. I hope that you don't have Charcot-Marie-Tooth and that some treatable cause of your neurological changes is found, e.g. perhaps Arnold Chiari (which is often associated with spinal bifida).

    Wise.

  4. #4
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    Thank you Dr.Wise!


    Thank you for your time!

    TB

  5. #5

    All things are possible through Christ who gives us strength

    Quote Originally Posted by Trout Bum View Post
    Hello All!

    I was born with spina bifida, been able to walk, I've had several operations including bladder augmentation back in 1985. For the last 10 years I've had severe muscle atrophy in my left leg, I've always been able to walk, but my left leg has always been weak. My left foot is Pes Cavus, really bad "hammer claw", my left leg has a "Stork Leg" condition. Last year I had an MRI and the doctor said I have a fatty lipoma on my spine which is causing my cord to tether. Resulting in the muscle atrophy on my leg. Up until 3 months ago my condition has been stable no major changes in my body.

    I went to a neurosurgeon a week ago and asked about having the cord de-tethered but after talking to him I'll pass. Didn't seem like any real good could come from the surgery. More of a risk then a cure or prevention. He basically said my cord could re-tether do to the scar tissue. Seems like most of the damage is done already. I have to self-cath , don’t have much control over bowels, take immodium to help with loss of bowel control. Anyway…


    My concern is this: I’m experiencing severe stiffness more than normal, pins and needle sensation in my feet and legs, my hands sometimes are getting tingling in them, my right leg is beginning to lose muscle and my right foot is Pes Cavus with “Clawing”. I’ve always been a little stiff but what I’m experiencing is crazy. I can barely more down the steps with out a cane. Some days are better but for the most part I use a cane to walk. Sometimes I think is this really happening???

    At first I thought I may have Charcot Marie Tooth but my Neurologist said that my condition is a result of Spina Bifida. When I saw him last year only my left leg was affected with the “Stork Leg” and he said that CMT is bi-lateral. However, my concern is the “Stork Leg” is beginning on my right foot and leg. Plus I’m getting tingling in my hands. So since I’m beginning to get bi-lateral “Stork Leg” and tingling in my hands I’m wondering if my condition is CMT and Spina Bifida. Bi-Lateral “Stork Leg” and tingling in the hands is a symptom of CMT.

    Can Spina Bifida produce the same symptoms as CMT? Or is it just Spina Bifida progressing? I really don’t know? How can I rule out CMT and just confirm that the Spina Bifida is taking a toll on my body as I get older.



    What Kind of tests can be done?
    Hello, I also was born with Spinal bifida & a club foot & one side of my body is shorter than the other & I too can walk (sometimes) You are the first person I have read about that also has the symptoms in your hands, however I also have the pain and tingling in my arms also. It is SO strange it comes and goes. One day it will be my right side, another day it will be my left, sometimes just my leg or legs, sometimes just my arm or arms and some days it is just my lower back where my spinal bifida is. So I do believe the problems in your hands are from the spinal bifida/nerve damage. I also have decided to not have the surgery. May God be with you always, much love to you!

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