My introducion

[Guest guest]

I have never done something like this before--my computer skills which have

always been very limited are expanding and therefore, enabling me to find groups

like this to write to and share experiences with. My name is Sharon , my father

was having problems with his legs and " numbness " , balance issues, etc. for many

years and getting nowhere with anyone. One day he read a news article about

this disease called CMT, gave me the article, and, of course, I looked it up on

the internet for a description of the symptoms. I then went to my primary Dr.

and asked for a referral to a neurologist. This was about 5-6 years ago. The

Dr. was very young and appeared to be very knowledgeable but unwilling to

consider the possibility of CMT-- he didn't even want to listen to my concerns

and this possibility. About one year later, I went back to my primary and asked

for another referral. They insisted on sending me back to the same Dr. He, of

course, did nerve conduction testing but didn't feel that the results were

serious enough and followed the exact definition of CMT. I kept saying that I

needed another Dr. opinion but didn't know sho to go to. Four years passed and

my balance appeared to be getting more unsteady (I was falling into things, not

serious but annoying). I had heard of another neurologist that was a little

more mature, so I asked for a referral to him specifically. After consultating

with him, we concluded that I indeed did have CMT and then decided on a plan.

He has been trying different meds for the muscle spasams but I am really not a

medicine person. I lean more toward natural remedies. I am going to a physical

therapist for balance and gait training which has been very helpful.

I work as a employment specialist with persons with barriers to employment. I

am soon to be a senior citizen(55), am a Gemini, love studying astrology and

like to knit, do crewl embroidery or counted cross stitching. I have two grown

daughters, and an 11 yeart old son. I would like to chat with people who have

the same concerns that I do about CMT. I wonder if it is always so hard to

diagnose it. My son plays basketball and has had some concerns with his

achilles tendon but he is growing so fast, the sports Drs think that is the

reason for the pain in his heel. My oldest daughter has issues with her back

and lower spine. My father uses a walker for ambulation but sits a great deal

and my grandfather had balance issues but was never diagnosed.

I need to end and get back to work. Sharon

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