It will be nice to get some information!

[Guest guest]

I have practically earned my MD trying to figure out what this was. I

thought I had trained neuro's every step of the way but the

information I kept getting was wrong. My grandfather had CMT,

undisputed. I have always had " orthopedic " problems. No one knew what

they were other than to say " congenital defects " in all areas of my

feet and ankles. My ankles are ball in socket and my knees are

rounding in areas that shouldnt be. No one checked me out

neurologically until last year.

I went to the MDA a few years ago, they checked me for reflexes and told me I

couldn't possibly have CMT with reflexes. Evidently this is wrong. I finally

went to the Cleveland Clinic so that they can connect the dots. It's been a

painful and tiring struggle.

I am 35 and have 2 sons 12 and 7. My husband of 15 years <navy man> is having

difficulty having a disabled wife and all that it entails. It has been a real

struggle especially when you throw Katrina in the mix! I also homeschool my

boys.

Another problem they are trying to decipher are these odd " asthma

attacks " I do have asthma but I have now been hospitalized 4x this

year for it. The bacteria they find is normal flora and can't

understand why I get so sick.

SO I am here for help, info and keeping my sanity. I don't have anyone to talk

to about this here and its been a lonely place. Any help will be appreciated!!!

Thank you kindly.

Lenore