My Introduction

[Guest guest]

I joined this group back in January, when I first went out on disability, but

wasn't able to read or participate until now. So I thought this would be a good

time to send out my introduction.

I’m 44 years old, married to a wonderful man, living in Southern California. I

have 25 years experience working in the medical/life insurance field, but now

disabled. No more human children at home, just the furry kind.

I’ve been afflicted with CMT my entire life, but was only diagnosed in Feb 2006.

The delay in diagnosis in our family was due to lack of awareness in the

provider community of the different ways CMT can manifest itself. To

illustrate, I had a hip replacement in 2001 at a university hospital that also

happens to be an MDA site, yet no one picked up on my CMT. It’s unfortunate,

since knowing sooner would have prevented me from taking medications and doing

things that were likely harmful to my health.

I have a multitude of “orthopedic” problems, including scoliosis, knee

surgeries, hip dysplasia/replacement, deformed feet, one curved ankle,

misdiagnosed “tennis elbow”, etc. I’ve had pain my entire life, but for some

reason my condition worsened significantly over the last few years.

The progression in a short period of time basically went from generalized

weakness/pain, occasional problems with my back/digestive system/knees/hips, and

pins/needles feeling in extremities.

To intense burning in lower extremities, significant digestive issues, extreme

fatigue, increased weakness, muscle atrophy, daily headaches, difficulty

breathing, chest pains, heart irregularities (electrical shooting pains &

flopping feeling), severe/debilitating nerve pain in hip & down one leg, and

difficulty doing any activity without significant consequences, i.e. lying in

bed in pain for days.

The good news is that after months of rest, supplements, a healthier diet, a

scooter, a good pain management specialist, a neurologist & pulmonary specialist

that care, and loving support from my husband, I now feel like I might just live

awhile.

And I’m looking forward to connecting with others in the same situation.

I do also hope that there is something we can all do to raise public awareness

of the different forms our disease can take. In the meantime, I’m grateful that

we have the Internet, which allows us to educate ourselves, educate our

physicians, and help each other.

Looking forward to getting to know everyone.