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Old 05-18-2012, 07:51 AM   #1
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bellahorse HB User
still waiting

Hi there. this is my first time on a health Board. I have a daughter who is 16 years old. was a premie by 2 months early. never really did much physical. just liked to sit and watch TV and play games and toys on the floor. always walking on her tippy toes. I tried to buy her walking shoes but she fell alot because it was harder to walk on her toes. she walked soo much better in the those keds sneakers. she would always complain that her legs were tired when we went shopping or just walking. she would rest often when outside playing. she had RSV when she was born also so was on inhalers for most of her life. she has low muscle tone and i've seen every doctor in NH about her feet and legs. she has Bunnions and her feet look deformed. it looks like the foot doesn't bend at the ankle it bends in the middle of her foot. every doctor I take her too says she has tight achellis tendons and put her in PT. she stretches daily and she owns a horse and rides it daily. that alone is streatching. that is the most activity she does. she can't run,or ride a bike for long periods of time without being done in 10 mins. of riding. she has to lay on the couch to relax the rest of the day. she has scollosis of her spine and they are thinking of letting her take her brace off after 2 years. she has a growth delay of 1 a half years. her leg mucles are so tight that her knees fold inward when bent. we have been doing PT with her for 4 years off and on now. they have tested her for CMT and came back negative. her muscle enzynes are not elevated. now she told me that she has numbing in her feet when she stretches. even at PT when they stretch her her feet go numb. I don't know were else to turn. she has had an MRI and EMG and everything came back with something underlining but nothing etched in stone. they said when they tested her for CMT she had a few positive but not enough to make it stick. like they needed 5 and only got 3 chromisones. I keep pushing to find out something on her .. I don't want to see her in a wheelchair in a few more years. and no Diagnosis. her doctor said there are people out there like her that don't have a diagnosis. if anyone can add some ideas that would be great.

 
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Old 05-19-2012, 11:03 AM   #2
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Re: still waiting

Welcome to the boards

Being a preemie and the problems she is having has she ever been checked for Cerebral Palsy? I only ask this because my grandson who is 5 has it and it sounds similar to what he is going through. He was 2lbs 15 oz and 10 weeks early. Just a thought you might want to do a search on the CP boards. Just a thought.

I have limb girdle MD but the way you describe her feet and tendons it really sounds more like his feet and legs than what my legs do. But wouldn't rule that out yet.

Hope this helps, Dreaman

 
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Old 05-22-2012, 06:05 AM   #3
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Re: still waiting

Thanks for your thoughts. yes she has been tested for that. Every test they do on her comes out like she has a few things wrong with her but nothing full blown yet. her Neuro doctor says to me that what ever she has is slow moving and is not life threating as of right now.
she is getting the scoliosis brace off this summer so we will see how weak she becomes after this is off. she is strong now but was so weak before.

can I ask anyone out there of what the signs were of there disease. like the very start of things???? just wondering.... Thanks again.

 
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Old 05-22-2012, 06:09 AM   #4
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Re: still waiting

I also forgot to mention that she has one leg an inch and half shorter than the other and one foot a size and half smaller than her other. when you look at the back of her legs one leg is smaller in size than the other one also.

 
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