Weakness

[Guest guest]

Hi Nina,

I reply the same way you do to a message. I am so new at this also.

What I don't understand is how do you reply to a reply ? So I just

post a new message w/ the same subtitle hoping that the person who

replied to me will know I am writing back. If there is an easier way,

I hope someone tells me.

I am happy for you that you will be seeing a new Dr. Let me know

how that goes.There are CMT experts in the states but I haven't met

any yet. So far I haven't had responses to my question of ; is there

a CMT specialty clinic in New York State? I have had DR.s who claim

to know about CMT but they really don't. I know that it affects us

all differently yet my Dr recently told me how he has pts. w/CMT who

are physically agile and maybe I need to exercise more. This he said

AFTER I told him how I am getting progressively weaker and barely

able to walk. It makes me feel like no one is listening. Just like

your brother( thank god); my son also tested negative but my grown

daughter refuses to be tested nor have my granddaughter tested.

It must be wonderful to have such an understanding mom to hang

out with. My mom has CMT also and complains alot, yet she refuses to

believe that I have any physical limitations and she constantly

criticizes me saying I need to push myself more. Thats my mom ! Enjoy

your Mom's visit and have fun. I am excited to be on this list and

back communicating w/people again. I shut down for awhile. You really

made my day when you answered my letter Nina. It was so nice to hear

from you and see how very much in common we have w/CMT. It helps me

to not feel so all alone. I suffer from severe lonliness. I am a very

young looking ( so I've been told) 42 yr old divorced,single, grandma

w/ a non sympathetic family.So when the pain gets bad I tend to

isolate. I am trying to change that. My upper arms hurt as well as my

legs and boy are they killing me now. NOt long ago I was one who

would workout at a gym 3 times a week and walk on my own. No

longer !!!!! The acceptance is sometimes hard to bear as I have to

take care of my granddaughter and its wearing me out rapidly. I can

not do half of things that we used to do together and it hurts

terribly. Not to end on a sad note I try to make the best of what I

can do and I am sooo very thankful.I was wondering why your email

address is Itch LOL......... What is the complete address?Take Care

Nina.

Jeannine