still no formal diagnosis, bilateral AFOs

[Guest guest]

Hi All,

Kim here . . . I wrote in a little more than a month ago, as a new

member. Unfortunately I was swamped with my business, the holidays

and my dad's move into a retirement community. I still have no

formal diagnosis of actully having CMT. As I explained before, my

EMG and NCV both came out as low normal and inconclusive. I never

had a chance to get back to all of you, who responded to my first

letter. I truly did appreciate it.

I have really enjoyed reading the digest each day, and althought CMT is

difficult in so many phases of life. I guess for the first time I at least feel

that I feel more connected to finally having a pretty good idea of what my

problem is!!

I never heard of CMT until the doctor brought it up to me in October, and I have

been going to various orthopaedic doctors, since I have been 13years-old! My

doctor is going to re-test me in a year. He is treating me as though I do. I am

in physical therapy and I now have bilateral AFOs.

I use one forearm crutch for short distances and a pair when I am going out for

long periods of time. I walk much better with two, but I am stubborn! I have

fought the AFOs, but they do make a world of difference, although I do feel my

gait is a bit more like enstein.

I refer to the forearm crutches as " sticks, " it just seems easier

psychologically. I fight using those too, and I hate to admit I really feel

much better using them.

I think that it is hard for me to think of what my friends and family think . .

.. although my husband tells me not too. He is a scientist, so he is nice and

logical!

I was very interested in the shoe topic the last few digest entries. My right

foot is pretty turned in and the other is getting there, they are also short and

wide, with high insteps (sound familiar) so I have been pretty much reduced to

P.W. Minors/Extra depth to enable the braces to fit. They are so very ugly, but

they are comfortable.

Today I made a trip to the shoe store with my prescription for Rocker Bottom

soles. I was not expecting all this glamour at 41!

I will hope to not be so lengthy in the future, but I just wanted to say that it

is nice to feel like I fit in here. It is also nice to be able to tell my

friends there seems to be a viable reason for all my strains, sprains, tears,

pulls and breaks - I'm not just clutzy!!!

Actually, like Gretchen as written, I am lucky to have good muscle tone. My

doctor and physical therpist have both told me of their concern for muscle

atrophy from the AFOs - Has anyone experienced this? Does it happen quickly, is

it slow? My AFOs are solid (not-hinged) because my ankles are very weak. (I

danced ballet and pointe for 12 years, am sure that did not help!) they come

below the knee with a leather strap and buckle, my last one just had velcro, but

I needed something more supportive according to my orthotist.

Oh and last but not least, do any of you have really bad hips?? That is my other

problem, I was told by my PT, they are very tight, there is another term, but I

have forgotten exactly what he said. I waddle somewhat (which is a trait in my

grandfather's side of the family) I'm sorry to sound ridiculous, but I am a

worrier!! Again, I will be shorter in the future, just had alot of catching up

to do!

My best to all of you,

Kim