My mother was diagnosed last year with CMT, a neuromuscular disease the MDA
helps cover.  Others in our family have it also, it's hereditary and I am on
a CMT support list.  I am avoiding diagnosis for insurance reasons.  Several
on the list are developing a questionnaire.  There isn't a lot of info on
typical families with this disease and we are developing a database for
researchers.
Several women with CMT have no symptoms until after childbirth and then may
lose use of their legs/feet/arms and or hands.  From what I've read there is
no known cause yet.  From what I've read deterioration of the myelin sheath
is part of what happens.
The survey will include questions on breastfeeding (because of my input).  I
am having some form of the following questions asked.  I would appreciate any
comments/suggestions/input.
Were you breastfed?  If so, how long were you breastfed?
During pregnancy, did you take prenatal vitamins?
Was your delivery vaginal or csection?  Did you have an epidural or other
medications?  If so, what medications were given?
Did you breastfeed your baby?  If so, how long did you breastfeed?  Did you
breastfeed or supplement?  At what age did your baby wean?
Did you have additional symptoms of CMT after childbirth?  If so, what were
they?
If you breastfed, did your additional symptoms appear immediately after
birth, or after weaning?  Was there any change in symptoms after weaning?
Thanks in advance.  I think it would be interesting if more neuromuscular
diseases started gathering this kind of research.
Mary Biever