Re: Visit to the MDA clinic

August 19, 2010

If it is a Charcot Joint you will need to be very patient working through

the healing process, and even then it may not heal correctly. Take care

of yourself and best wishes.

Visit to the MDA clinic

Hi..My name is JoAnn, I have CMT1A as does my daughter (23) and my

grandson Hunter (3). I live a little over an hour south of downtown Chicago,

where I go to the MDA clinic at Northwestern University. We left home today at

9:30am and got home after 6:00pm. It was way too long of a day for me! I

discussed with my neurologist about possible surgury on my right ankle (I

previously had a tendon transfer and had it scoped over 10 years ago and before

I knew had CMT). He pretty much vetoed that idea, which actually was kind of a

relief. He said I could be devoloping a " Charcot joint " , so I will have to do

some research about that. I also asked the genetic counselor to prepare a letter

to send to family members about the possibilty of having a genetic disorder, I

had been sitting on the fence with that for 6 years. I also discussed with my

MDA rep Hunter's upcoming meeting with the school district (he's having an

evaluation for services in Sept.)The MDA reps can arrange to attend 504 and IEP

meetings with you in an advocate role. They know what to ask for in regard to

services, etc. That is a relief!. My daughter and I are planning to go to Wayne

State after she has the new baby, due in Februaury. She has a very difficult

pregnancy with Hunter, I pray this time is easier for her. Hunter goes the the

orthopdic surgeon at the end of the month. He saw the neurologist from the

pediatric MDA clinic at Rush Univeristy on the 9th. He is having genetic testing

done tomarrow, and thank God MDA is paying for it. It's hard to describe how I

feel about that little guy being affected at such a young age, watching him fall

and struggle with things. I have had no experience with the pediatric side of

CMT, my daughter and I were diagnosed together, she was 16 and I was 38. I know

this message is rather long, I apologize. Please keep us in our prayers, you all

are in mine.

JoAnn Haase

August 20, 2010

I'm no expert, but I thought Charcot Joint was usually a term applied to knee

joints failing in diabetics. CMT people most often have the ankle joint fail

from what most doctors will call end stage arthritis

I know many doctors will sauy they;ve heard of CMT but it's not uncommon for

them to get it confused with Charcot Foot, also most often seen in diabetic.

We heal slow, but doabetic are probably worse off in that regard

Or maybe a Charcot Joint is a

place where people with CMT hang out. :-)

>

> If it is a Charcot Joint you will need to be very patient working through

> the healing process, and even then it may not heal correctly. Take care

> of yourself and best wishes.

>

> Visit to the MDA clinic

>

> Hi..My name is JoAnn, I have CMT1A as does my daughter (23) and my