Re: Baltimore CMT

[Guest guest]

Hi Jackie,

I see Dr. Vinay Chaudhry, a neuromuscular bigwig at s Hopkins

Hospital. My orthotist is Bridgeman of D & J Medical (410 339-

7838). I was referred to him by an orthopedic surgeon, Dr.

Guyton. I've seen several orthotists and is the best. The key

is to make sure your insurance covers the AFOs.

I'm currently on my third pair(due to the degeneration inherent in CMT) and I'm

never charged for an adjustment. I'm going back to see Dr. Chaudhry the end of

next month - haven't seen him in 2 and a half years. I'm only going back cause I

want to get some baseline measurements on pulmonary function.

I have a very close friend who is nearing the end of his ALS journey and his

experience has taught me to learn as much as I can about the many ways CMT is

affecting my body, and be as prepared as possible for potential future problems.

I wish you luck on finding a neurologist with CMT knowledge -

hopefully this forum will help. A good orthotist is worth his weight

in gold - good luck with that, too.

[Guest guest]

,

I used to see Dr. Drachman at s Hopkins and then Dr. Neil Porter at U

of MD. Yes I have heard of Dr. Chaudhry; he is the one doing the Vitamin C

studies.

I am going to start looking for a good gait specialist and CMT specialist here

in Florida. I understand U of Miami has good doctors. I just got the Helios

braces so I am going to find a specialist who can help me with learning to walk

better in them.

I too just knew someone who passed away from ALS. Tt is such a sad disease and

puts CMT into perspective. I have been living with CMT for over 20 years, so

each couple of years is a new adjustment period.

Jackie