Cedar-Sinai Charcot Marie Tooth Hereditary Neuropathy Center

[Guest guest]

Has anyone received treatment from the Cedar-Sinai Charcot Marie Tooth

Hereditary Neuropathy Center in Los Angeles? Their website is:

http://www.csmc.edu/10359.html

I would appreciate any information you may have.

J. Warren

[Guest guest]

I went shortly after being diagnosed and hearing my neurologist say

that she'll have to read up on it. I was hoping to get a baseline appt

and get " hooked-in " to a clinic that would understand my situation. I

was a little disappointed. I went with 3 weeks of severe numbness and

pain in my right hand. Turns out the first appt is always with the foot

and ankle specialist, and though I've had more than my share of foot

and ankle issues was stable at that moment. Although my hand was

killing me he wanted to look at my feet. After pushing the point that

my hand really hurt he finally looked at it and said " we can do surgery

on that " (carpal tunnel release). That was not what I was expecting to

hear!

He referred me to a shoulder guy in the group and that was that.

I asked about that chronic deep bone pain and asked if there was

anything I could do. He had no suggestions. I don't really want to

start new meds but was thinking for those days when things are really

bad, something would be nice. I guess I was just expecting more. The

doctor seemed very competent and did point out that my achilles tendons are

shortening up affecting my ankles' range of motion and referred me to PT (which

I still haven't done). I guess I'll go back the next time I have an orthopedic

injury as at least they know about CMT. That's my 2 cents for whatever it's

worth!

Holli

[Guest guest]

I tried to go on their website but there is a charge!! Has this changed now???

Karon

[Guest guest]

Karon,

The HNF website has always had a fee for 'full use' (meaning paid 'members'

would have access the new articles provided each month, also those in the past)

However, there is no charge to view the Cedars Hospital Neuropathy site link.

Gretchen