My introduction

[Guest guest]

Hi, Group.......My name is June.

I found the site listed among others on the site and picked

it as the one to try. I am 69 years old, widowed, mother of 2 adult children

and live alone in the eastern part of Central Pennsylvania. I still work full

time as a bookkeeper.

About 15 years ago I noticed a definite weakness in my ability to walk up

stairs. I had to use the railing more and more. I began experiencing bad pain

in my neck when sitting at my desk at work. Also noticed tingling in feet

along with swollen ankles and feet. My Family Pract. tested me and diagnosed

Cervical Arthritis which along with my already diagnosed high blood pressure.

Then about five years ago I had a few bad falls, two at work and one at the

local mall.

No broken bones, but very badly bruised. I began being very careful how I

walked and noticed my right foot dropped a lot and I would trip when it did.

Then my feet began getting numb. My balance was also getting very bad. About

this time I began realizing that I had the same symptoms that my father

displayed in his later years - he had been diagnosed with Pernicious Anemia and

had to have B12 shots. I convinced the Dr. to send me to a neurologist.

After much proding, MRIs, EMGs, etc and drawing blood which was sent to Athena

Labs, the neurologist informed me I had " peripheral Neuropathy " , probably

hereditary.But he said he was unsure of the actual cause of the " peripheral

Neuropathy " . Said I could go to Phila. for further testing but that regardless

of the outcome, there is no cure. So, I never went. Rationalized that it

wasn't THAT bad. Also note I have hammertoes and high arch and must wear XX

wide shoes (only wear New Balance because of wide toebox).

My daughter, who is now 47, began experiencing the beginning signs about a year

ago and went to a neurologist in her area (Washington DC) this spring.. He did

same tests I had including the blood work and she was diagnosed with CMT1B. He

told her that since it is hereditary, most definitely from a parent, and since

her father did not present any symptoms and her mother did, then it was a sure

bet that I (the mother) had CMT1B also and after hearing of her grand-father's

symptoms that he passed it on to me and then to her. I am going back to my

neurologist with this new info. I know it won't change anything (no cure, etc)

but it helps to have a name for this disability.

I take Alpha Lipoic Acid (at the neurologists suggestion) along with my BP meds

and a good multi vitamin. The disease has progressed since I first noticed it -

I no longer can even step up on a curb without help, steps are a REAL problem

(maybe some weight loss would help there - am about 40 lbs overweight due to no

more evening walks - it is too hard to walk. Use a cane 90% of time now - and

100% of time at malls or on the sidewalk.

I joined this sight to talk to others on-line who have CMT, especially any with

CMT1B. I mention the name of the disease to my friends and co-workers and no

one ever even heard of it, so I feel kind of alone. I can look back and see

symptoms even back to my childhood (clumsy, last picked for Dodgeball, failing

marks in gymnastics) and I feel that the fatigue I felt all my life is a result

of the CMT - I used to think I was just lazy.

Anyway, I know this is lengthly. Sorry about that, but I wanted to explain

" me " . Hope to hear from " you all " with info and discussions on this creeping

disability. I have read many many web pages on CMT, and am encouraged by a lot

of what I read.

PS. - my daughter is having her 3 teenage daughters tested and my son and his

pre-teen will also be tested.

Thanks for " listening "

June