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Old 06-25-2012, 10:14 AM #19
Susanne C. Susanne C. is offline
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Join Date: Jul 2011
Location: Mid-Atlantic coast
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Susanne C. Susanne C. is offline
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Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
10 yr Member
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Kitt, I do not think that height has anything to do with hereditary neuropathies, but studies have shown that it is a factor in other length dependent neuropathies, including diabetic neuropathy, so I was just curious. I should have been clearer. I think our symptoms may be worse because of abnormally long arms and legs and the length the weakened signals have to travel, but that is just speculation. My neurologist and podiatrist both mentioned it, and my other son was tested for Marfan's syndome because we are such anatomical freaks, and he has cardio pulmonary issues due to a caved in ribcage, 5+ on the Haler index.

Yes, Boiler, age of onset and severity of symptoms can vary wildly even within families. As I said I only recently needed canes and am considering bracing, but my sister had braces since early childhood. It can absolutely be the same thing and as Kitt said, your exercise regime may have aggravated it. Please realize that we are patients, not doctors, and we are not diagnosing you, just trying to help you categorize your symptoms and options.
I think the coldness may be highly significant. Is it accompanied by increased pain and do you have great difficulty getting warm?
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Kitt (06-25-2012)
 


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