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    Update

    To my good scoli friends, I have an UPDATE: I saw the neurologist yesterday. He's completely baffled and sending me on to Madison for more extensive genetic testing. Meanwhile, my good friend that...
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    Susie Bee, I found out some information about...

    Susie Bee,
    I found out some information about the recessive CMT. You CAN have a mild form of the disease with only ONE allele IF you have an abnormal EMG. So if you are having symptoms, you would...
  3. Susan, There is NOTHING funny about a SCI. But I...

    Susan,
    There is NOTHING funny about a SCI. But I do find "some" humor in the fact that at least you have a reason for your walking troubles. I've been accused of having a screw loose, but I'm just...
  4. Susan, if it makes you feel any better, I look...

    Susan, if it makes you feel any better, I look like Frankenstein when I walk, too. People stare... I'm not used to it and am embarrassed to go in public. Some people just smile a pitiful smile. I've...
  5. Susan, I'm glad that they caught the pulmonary...

    Susan,
    I'm glad that they caught the pulmonary emboli as quickly as they did.
    You are in intensive PT/OT because they are trying to make sure you CAN walk before you go home.
    They won't send you...
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    Makes me wonder if your mom had the recessive...

    Makes me wonder if your mom had the recessive type. That means that ALL of her children would be carriers and none would be affected unless your father also had the recessive type. The odds of that...
  7. Susan, In my case the guy was just rude and his...

    Susan,
    In my case the guy was just rude and his doctor friend was rude. They did not harm me physically.

    In your case I'm not sure if they harmed you or not. If they did, it wouldn't be a waste...
  8. Susan, I think we ought to go after the...

    Susan,
    I think we ought to go after the psychologists(Ph.D. the D stands for Dumb) or maybe doctor in your case?! It's because of them that we have had delayed treatments! Although, I'd have a hard...
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    Thank you all for your very kind comments!...

    Thank you all for your very kind comments!
    Actually, I'm not digesting or processing or feeling like I have to come to terms with anything. After I started having some severe symptoms, I KNEW that...
  10. Susan, I hope you make a full recovery. I'm...

    Susan,
    I hope you make a full recovery. I'm disturbed to hear that things went wrong and so late in the healing process no less. You have hope of regaining your strength and walking ability. That's...
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    Ed, I understand where you are coming from as...

    Ed,
    I understand where you are coming from as far as there not being a treatment for a terminal illness. It greatly affects my family, however. My daughter and son have not inherited idiopathic...
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    I have cervical dystonia. It pinches both the...

    I have cervical dystonia. It pinches both the blood vessels and the nerves. The muscles involved are near the brachial plexus. But, in general, my hands aren't weak. They are more shaky and I have...
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    Linda, Just one more thing. It's my...

    Linda,

    Just one more thing. It's my understanding that people with CMT usually have mild scoliosis. That may be why you don't see a whole lot more of us.
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    I was thinking the same exact things. Thanks...

    I was thinking the same exact things. Thanks ahead of time for asking them about me. I know a huge surgery would take a lot out of me. But if the nerves could be kept from dying I would recover. On...
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    My symptoms do fit. Chronic pain and fatigue. I...

    My symptoms do fit. Chronic pain and fatigue. I can no longer walk normally. My calf muscles are gone so my lower legs are really skinny. My balance is bad and I'm uncoordinated. I've started...
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    Thanks, Linda. I'll have to tell my scoli doc...

    Thanks, Linda. I'll have to tell my scoli doc if/when I eventually go back to see him. I don't know if it will affect whether or not I should have surgery. I read on the NIH page that they sometimes...
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    Jennifer, My dad died undiagnosed and received...

    Jennifer,
    My dad died undiagnosed and received NO treatment what-so-ever. His doctors were completely incompetent. I was baffled and studying genetics in college at the time. So I had my geneticist...
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    Charcot Marie-Tooth (CMT)

    Well, folks, that is my diagnosis after my DNA testing. I feel it belongs here because scoliosis is one symptom of this disease. So I will use this thread to talk about CMT even though this is a...
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    Thank you guys so much. I really means a lot to...

    Thank you guys so much. I really means a lot to me!
    I ended up having to have a CT scan from the second fall last Saturday night. My head just keeps hurting and the pain isn't getting any better,...
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    If this thread isn't helpful to anyone else, at...

    If this thread isn't helpful to anyone else, at least it's helpful to me. Here I sit having dialogue with myself. But it puts things into perspective for me and provides a timeline. It's open to the...
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    Wow! There needs to be a "like" button. LOL I'm...

    Wow! There needs to be a "like" button. LOL
    I'm really happy for you both!
  22. Tableone, I am also one who gets injections. My...

    Tableone,
    I am also one who gets injections. My Botox injections in the neck and upper shoulders can be excruciating. My doctor gave me 2mg of Ativan to take one hour before the procedure and 2mg to...
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    I wish your daughter well and you some peace of...

    I wish your daughter well and you some peace of mind.
    It's horrible being a mom and seeing your child suffer.
    Linda is so reassuring. She pretty much knows what they will do.
    Please keep us...
  24. Susan, Oh I hope they figure out what's causing...

    Susan,
    Oh I hope they figure out what's causing your leg paralysis tomorrow!!!

    Thank you everyone for your well wishes for me on Susan's thread! I hope you don't mind, Susan.
    I can still walk....
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    Sorry about that. It wasn't meant to continue. I...

    Sorry about that. It wasn't meant to continue. I only made a comment because it was mentioned and it is another complication that can happen.
    If we focus on complications when we decide to have...
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