introduction and questions

[Guest guest]

Hello! I am a 30 year old single mom.I have a 8 year old boy. I was

diagnosed with CMT when I was around 8 years old. I was sent to

Shriners crippled childrens hospital that did 5 surgeries over the

course of 9 years. Two of the surgeries where tendon trasfers on each

foot. I now have to use AFOs for my foot drop. I have noticed in the

past few months that I may be having breathing problems and sleep

apnea. The Dr. I have at this moment will not listen to me at all on

the subject he thinks I am " too young " . I even took him a print off on

the lindacrabtree website about breathing and CMT. I am on Medicaid so

it is not easy to change DR. right away.

I am trying to get in the MDA but that may take 3 months they say. I am very

frusterated with my DR.

I have been waking up in the night gasping for air,headaches,poor

memory,tired,fatigued,mental confusion,chest pains, and the Dr. won't

listen. I am very upset about it all. I was wondering if anyone here

had any ideas or has had breathing problems? Thanks for letting me

share. And thanks ahead for any replies.

[Guest guest]

Hi Lori:

I don't have the CMT diagnosis but a very similar diagnosis named hereditary

spastic paraplegia. My symptoms include weakness and stiffness in my legs. My

symptoms also include foot drop and in the middle of the disorder I had pain in

my thighs monthly. I've had HSP since I was 16 and presently 32 and a mom.

Before my pregnancy, I used four arm crutches to get around. I continued to use

them until the 6th month, where the baby was growing bigger and needed a

wheelchair. I didn't really have any changes in the stiffness or spasisity in

my legs/feet but I became more weak. I kept my energy up by doing

yoga/stretches and weight lifting by using light weights and gradually heavier

ones. I also had a PT come into my home to keep my body from atrophing.

I started walking with a walker with her very gradually. Because of the walker,

I was also able to get back using my crutches two months after my delivery.

Remember, all women, no matter what disorder you have will have different

symptoms.

Marin

[Guest guest]

Welcome to the group Lori.

Geri

in Minnesota