CMT doctors

[Guest guest]

Hi everyone

Being relatively new to CMT I am wondering if I am seeing the correct doctors.

I see a podiatrist for my orthotic insoles that I am still waiting for, and a

neurologist for my EMG's.

I've only had 1 EMG, that was last Sept. and I'm due to go back in a few months.

I like my Neuro. but he seems to be more interested in tracing the cause of my

CMT then he does me as a patient. He says as of now there is no cure and he does

not think I will be severely affected by CMT (as the need for a wheelchair) Is

it correct for him to predict my future as far as I've read progression can not

be determined??

I wanted to see if I need to see any one else,

Best regards

ann

[Guest guest]

Hi Patty,

I haven't been online for a while.....I was just going thru my 100's of emails -

I too have been looking for a CMT expert to help me. I know I need surgery as

the braces are no longer correcting my foot deformities. I read an article in

Quest magazime about a Dr. Shy and was going to give him a try. I am in NH and

there is no one here who specializes in CMT. Good Luck with your search. I hear

there is a doctor in Seattle, Washington who is supposed to be awesome....too

far away for me. Let me know how you make out.

Hope

[Guest guest]

Patty and Hope,

These guys may be too far away from you but first, Greg MD in

Seattle, a neurologist, is wonderful. Secondly, there is a new CMT Foot

and Ankle doc in Los Angeles I had the pleasure of speaking to, Dr.

Glenn Pfeffer. I personally haven't been to either one for

CMT 'issues', however, if I need to, I will. Let me know if you want

the contact info for these gentlemen.

~ Gretchen

[Guest guest]

You are so fortunate to have a physician knowledgeable in CMT. The nearest to

us is Philly, a 5 hr. drive, or Detroit, an 8 hr. drive.

P.

[Guest guest]

Hi ,

I saw your post and was wondering where you live. I'm in PA and have found a

good neurologist and orthopedist who are very knowledgeable with CMT. These

Docs are in the town and Lancaster area. I did some research and found one

in burg, but he didn't participate in my insurance plan. My son is having

surgery to correct a foot deformity in a few weeks and we were really impressed

with his ortho - he's a really nice guy too!

If these areas suit you I'd be glad to give you the Docs names.

Carmella

[Guest guest]

Hi, Carmella........my name is June (age 72)| and I saw your post and was quite

interested as I live in PA (about an hour north of Reading on Rt. 61). I was

wondering if you would be so kind as to forward me info on Drs - mainly

town but burg would be OK too. Lancaster is a little far for me to

drive. Thanks so much in advance. Right now I am anticipating major surgery

in about a month for a colovesical fistulae and I anticipate my walking will be

worse after the surgery - it is bad enough now - and I really would appreciate

the names of the Drs. so I can get in touch with one familiar with CMT (my

local neurologist is not - I was diagnosed and then he said I should go to

Hershey if symptoms got worse as he was new to CMT 1B. I never went as I can

walk OK with a cane and around the house without, but now, with major abdominal

surgery looming, walking will be a major problem.

Except for the internet, I don't know one other soul who has this CMT (except my

dad (who is dead now) and my daughter, age 50, was diagnosed about 3 years ago.

I only started with major symptoms at age 65 tho looking back I now know why I

was so clumsy and with skinned knees and unable to participate in most gym

classes as running was almost impossible. I just thought I was clumsy. Then my

Dad showed same symptoms I now have when he was in his late 60s and Dr. didn't

have an answer except that he had pernicious anemia and he said that caused it.

But my Grandad walked with 2 canes before he died and my Great Grandfather was

unable to walk the last 5 years of his life - so the trail is there.

Anyway, back to subject, I intend to see a CMT Dr. after this surgery - too much

to deal with before.

Good luck to you and your family on your son's foot surgery. I have high arches

and hammertoes but never had enough of a problem for surgery, tho now my toes

are fixed and won't move at all.

Well, I've rambled on. Thanks again in advance.

June Bensinger

Re: CMT doctors

Hi ,

I saw your post and was wondering where you live. I'm in PA and have found a

good neurologist and orthopedist who are very knowledgeable with CMT. These Docs

are in the town and Lancaster area. I did some research and found one in

burg, but he didn't participate in my insurance plan. My son is having

surgery to correct a foot deformity in a few weeks and we were really impressed

with his ortho - he's a really nice guy too!

If these areas suit you I'd be glad to give you the Docs names.

Carmella

[Guest guest]

Hi June,

Well you are fortunate you have not suffered a life

time of CMT and being mobile at 72 is great. I was

diagnosed at the age of 5 and I am 32 now. Mobility

is a challenge and I will be lucky if I am still

walking at all by age 40. One thing I wouldn't

recommend is the Philadelphia University Hospital. I

went there after a long waiting list and apparently

the neuroligist there was a world renoun neurologist

who worked with thousands of CMT patients. When I saw

him he looked at me 5 minutes and said " typical CMT "

after 5 minutes he asked what it was he can do for me.

I said simply " anything you can " The doctor said " What

can I say you have CMT there is very little u can do " .

He later told me to re-evaluate my life and prepare to

be in a wheelchair. As much as what he said maybe

true I did not like him. More recently I went to the

UMDNJ hospital and unfortunately I saw a doctor there

who knew the doctor I saw in Philadelphia, apparently

he studied under him so his approach was the same and

told me there was really nothing that can be done.

Both doctors said no to excercise or PT. The bracing

AFOs which I already wear was about all they said was

good but ofcourse I already had them. They also said

surgery in the long run was no good. Sorry for being

so negative but make sure you see someone who is

willing to explore the options and see what works best

for you. I think when doctors are in the field too

long they see people like machines. Best of luck and

keep us posted on any progress you may have.

Andy

[Guest guest]

Hi June,

The neurologist we saw was Glenn A. Mackin he is with Lehigh Neurology. We went

to the town location. The number is 610-402-8420. Dr. Mackin is the one

who referred us to the Orthopedic Doc.

The ortho Drs. name is Alan S. Tuckman he is with Lancaster Orthopedic Group.

The number is 717-733-9200. The interesting thing is that my son is having his

surgery at St. ph's (near Bernville) so maybe he would have hours in the

Reading area.

The docs I check out at Penn State (Milton Hersey Medical Center) was R.

and Zachary . Their number is 800-243-1455. I just know that they

looked good on paper and both deal with neuromuscular diseases.

My son was diagnosed with CMT 1B in Dec 2006 and that was the first time we

heard of it. So I'm still learning about it. Turned out that my sister was

also diagnosed with the same shortly afterward - it is true what they say about

members in the same family having the same type but being affected differently.

We have been fortunate to have found someone in the CMT group that has been

guiding and supporting us through his upcoming surgery as her son went through

the same procedure prior.

Just a side note, my sister lives in Millville and we have a cabin in Laporte so

we probably pass by you regularly.

Hope this info is helpful. Good luck with your upcoming surgery and with

finding a doc.

Keep me posted.

Take care

Carmella

[Guest guest]

Thanks, Andy..... much appreciate reply. I guess no one in our neck of the

woods even heard of CMT when I was growing up (and falling around) in the 40s.

It is late onset but believe me, there were symptoms but I never knew what they

were from - couldn't run, funny gait, skinned knees all the time. Anyway, now

my daughter, 50, has it about like I did at that age but she knew enough to get

diagnosed after knowing what I had etc.

Yes, my neurologist told me nothing he could do, either. Said I could go to

Hershey and get in MDA program but there was nothing would stop the progress

(and it IS progressing). I am looking ahead now, till post operative and if by

some chance being laid up will make this worse, etc. I hate dealing with two

different illnesses at once but I want to be prepared or know where to go if

something more happens to nerves in feet & legs due to this surgery.

Thanks again for your info.

June

[Guest guest]

Hi, Carmella.........thanks for reply and the Drs. names. I will keep them on

file and see how surgery goes - who knows, maybe I will be lucky and come out of

it same as I went in.

CMT1B is what I and my daughter have. Dad had it but they didn't know what it

was etc etc. Daughter just started having balance problems and numbness and

tingling in feet and legs about 3 years ago. Her neurologist told her to keep

as active as possible but not to overdue it - don't go for the burn. Every Dr.

is different I guess. He is in Fairfax VA.

Thanks again,

June

[Guest guest]

Andy...you could be writing about my life....but I'm 65 and in a w.chair. and

yes the same thing with doctors.

Geri

[Guest guest]

Andy,

How truly pathetic your docs said " there's nothing they can do " . How truly

pathetic they do not understand ways of managing symptoms and blew you off.

Being diagnosed so young, having surgery, physical therapy, and being told to

swim, bike, and walk in the sand were all great lifesavers for me and came from

a general orthopedist (and this was in the 1960s) Into my teens, then,

neurologists began trying me on Potassium supplements and gave me Ritalin for

fatigue.

All my docs, plus my father, were always very encouraging regarding my body and

having a positive attitude.

In addition, general Internists have been very helpful; one suggested Vitamin E

and nutritional changes, another writes " prescriptions " for exercise. And as you

know, I am a believer in exercise, nutrition, and the power of a positive

attitude.

There have been exercise studies on CMT done in the past also. You may want to

look in our Files about Exercise and CMT.

I hope you can get a much better medical team to help you. Remember,

there is much we can do for ourselves.

~ Gretchen

[Guest guest]

Gretchen,

That's why this forum is so helpful for me and many

others. I stopped seeing any doctors for my CMT for

15 years because of my terrible experiences in my

childhood. I made a New Years resolution to make

myself go through the process again hoping I would

hear better news only to hear even more discouraging

news. I hate to say this but both places were

recommended by a CMTA and well I would like to think I

just had bad luck. On a positive note I would like to

say JFK Rehabiliation Hospital has been very

positive. They are physiatrists and when I went a

team of 5 doctors examined me and think they can make

an AFO that will help following up with Gait training.

So far both braces they made were terrible at least

for me and I wasn't able to walk at all in them. The

place affiliated with the hospital said it was not

supposed to make me walk more normal rather it was to

make it so I can balance standing up. The problem was

one foot was pointed so high on my arches I couldn't

put my foot flat on the ground and the other was point

at 3:00. When I went back to the team of

Physiatrists, they looked at them appologized and

threw them right in the garbage. They made me a 2nd

pair and no they are both pointed downward causing me

to fall over. I made a commitment to myself and for

my daughter that I would not give up. I don't know

why it is so hard to cast my feet so my feet are at

the very least straight. When I was a child I went to

UMDNJ and they really made my as a study participant

where college interns would study me and they really

did nothing for me because they were merely a

" teaching hospital " I hated going as a child and it

made me very pessimistic about doctors. I just want

one doctor in my life who gives me something positive

to hold on too. I have gotten more out of hearing

other CMTers experiences and therapies then all the

doctors combined. I would do whatever it took to

improve my condition or at the very least sustain it.

My goal is to walk my daughter down the aise one day

and she is only 7. The doctor recently said I would

be in a wheelchair in the next few years. I currently

do not use a cane but I am very weak. The doctor even

asked me if I was in a group home and when I said no

that I am a administrator in the Judicial system he

was surprised. He made me feel far more disabled.

Even if I was more disabled doesn't make me any less

intelligent. Yeah the doctors in my life surely let

me down............sigh

Andy

[Guest guest]

I have got to tell you Andy...I'm with you all the way on this one....been there

done that and still searching for good doctor!Sometimes I think if there isn't a

cure they're not very interested.

Just my feeling!

Geri