Re: getting appointments

[Guest guest]

Mark,

My daughter is 14. We do have insurance so that is not the issue. I just prefer

to see someone that returns calls. I don't mind a wait for an appt but it took

months to get through to a person to make the appt. So frustrating.

Barb

[Guest guest]

Sorry to here it was so frustrating. Good luck at Hopkins. I hope it works out.

I'll try to remember to speak about my nephew's visit there at dinner tonight.

Mark

>

> Mark,

>

> My daughter is 14. We do have insurance so that is not the issue. I just

prefer to see someone that returns calls. I don't mind a wait for an appt but it

took months to get through to a person to make the appt. So frustrating.

>

> Barb

>

>

>

>

>

>

>

>

[Guest guest]

Nephew had little to say about his visit and could not remember the name of the

doctor. We were out when the topic came up, so he could not go back to his

records for the name. Like I said, he was not all that happy with his visit, but

it could be more about the news he got than the quality of the clinic.

> >

> > Mark,

> >

> > My daughter is 14. We do have insurance so that is not the issue. I just

prefer to see someone that returns calls. I don't mind a wait for an appt but it

took months to get through to a person to make the appt. So frustrating.

> >

> > Barb

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Thanks so much for asking!

Re: getting appointments

Nephew had little to say about his visit and could not remember the name of the

doctor. We were out when the topic came up, so he could not go back to his

records for the name. Like I said, he was not all that happy with his visit, but

it could be more about the news he got than the quality of the clinic.

> >

> > Mark,

> >

> > My daughter is 14. We do have insurance so that is not the issue. I just

prefer to see someone that returns calls. I don't mind a wait for an appt but it

took months to get through to a person to make the appt. So frustrating.

> >

> > Barb

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

But speaking of appointments, it made me realize we had not done ours

yet for Detroit. Yikes, they are already booked for August! This is

something we all have to remember. After that first anxious and nervous

visit, we need to plan FAR AHEAD to keep us on track!

Mark

> > >

> > > Mark,

> > >

> > > My daughter is 14. We do have insurance so that is not the issue.

I just prefer to see someone that returns calls. I don't mind a wait for

an appt but it took months to get through to a person to make the appt.

So frustrating.

> > >

> > > Barb

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

I once tried to get an appointment for Hopkins with the same negative result;

personally I think Hopkins is a myth and doesn't exist.

Jerry Walfish

________________________________

From: meandcmt <mrwillis@...>

Sent: Wed, February 23, 2011 1:42:58 PM

Subject: Re: getting appointments

But speaking of appointments, it made me realize we had not done ours

yet for Detroit. Yikes, they are already booked for August! This is

something we all have to remember. After that first anxious and nervous

visit, we need to plan FAR AHEAD to keep us on track!

Mark

> > >

> > > Mark,

> > >

> > > My daughter is 14. We do have insurance so that is not the issue.

I just prefer to see someone that returns calls. I don't mind a wait for

an appt but it took months to get through to a person to make the appt.

So frustrating.

> > >

> > > Barb

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hopkins does exist (LOL) but it is a nightmare getting an appt. G-d forbid you

have to cancel for any reason and then you are waiting another 6 months.

Dr. Neil Porter at U of MD is also a very good neurologist and is familiar with

CMT nad it does not take forever to get an appt.

 I used to see Dr Drachman at Hopkins and then switched to Dr. Porter. I

now live in Florida so i don't see either one, although Dr. Drachman was

fabulous with writing a letter to SSA for my disability.

Jackie

Axonal CMT-Type Unknown

49

Age of onset: 22

Double AFO's

Re: getting appointments

But speaking of appointments, it made me realize we had not done ours

yet for Detroit. Yikes, they are already booked for August! This is

something we all have to remember. After that first anxious and nervous

visit, we need to plan FAR AHEAD to keep us on track!

Mark

> > >

> > > Mark,

> > >

> > > My daughter is 14. We do have insurance so that is not the issue.

I just prefer to see someone that returns calls. I don't mind a wait for

an appt but it took months to get through to a person to make the appt.

So frustrating.

> > >

> > > Barb

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Thank You Jackie.

> > >

[Guest guest]

Hi Jerry -

When I would go to s Hopkins I would see Dr. Cornblath. I found him

to be an expert on CMT. To make appointments with him I always had to go

through his office assistant Tawney.

Good luck.

Clyde

> >

> >

> >

> >

[Guest guest]

Wow! I had no idea you guys had such problems with appointments.

Cedars sinai in LA takes care f me, and even when I had just returned from 15

years in europe, never having had an appt there, was able to get in with their

CMT neurology specialist, whom I cannot recommend, as he seem to think CMT stops

at the thighs.... he has no interest in or real grasp of the hands or the pain.

But for the hands and pain it is also not hard at all to get appts with top pain

and hand specialists.

Interesting.

On Feb 23, 2011, at 5:00 PM, Jackie Sachs wrote:

>

>

> Hopkins does exist (LOL) but it is a nightmare getting an appt. G-d forbid you

have to cancel for any reason and then you are waiting another 6 months.

>

> Dr. Neil Porter at U of MD is also a very good neurologist and is familiar

with CMT nad it does not take forever to get an appt.

>

> I used to see Dr Drachman at Hopkins and then switched to Dr. Porter.

I now live in Florida so i don't see either one, although Dr. Drachman was

fabulous with writing a letter to SSA for my disability.

>

> Jackie

> Axonal CMT-Type Unknown

> 49

> Age of onset: 22

> Double AFO's

[Guest guest]

Once I stopped going to 'specialists' at academic institutions (i.e,. UCLA, USC)

and started seeing neurologists in private practice, I had no problems getting

appointments. At one point my family wanted to take me to Mayo; with my senior

year approaching, no way was that going to happen.

The 'specialists' were usually overworked - or just spread too thin, their time

was limited due to teaching, research, publishing, clinics, etc.so 'appointment

wait time' was long. I also found them to be emotionally and socially very

distant - seperating the disease from the person.

Since then, ordinary neurologists in private practice, not encumbered by the

rigors of academia, have proved to be the best for me, however, no one, not any

of them, or the ones in academia were/are experts in CMT. In my experience I

found them to be much kinder, sympathetic and reasonable (listening to

me),accepting the person before them was real with CMT and therefore of help in

managing symptoms.

In reality, no one, and I mean no one, on this planet is 'the CMT expert'. If

there was more people would be in treatment of some kind and

progression/symptoms would be reduced or absent and we wouldn't have such a

proliferation of CMT online forums, networks, groups, websites, bla bla bla.

Those of us who have CMT are the 'real experts'.

The researchers that are currently working on CMT hold promise - but that's

futuristic.

If I need a neurologist, I know who to call and have no problems getting an

appointment that same week or next.

Gretchen

[Guest guest]

Sympathetic, maybe.

Knowledgeable? I don't think so.. In fact, most of the time I have felt that I

was paying these people for the privilege of running tests on me to expand their

(limited) knowledge of CMT.

In fact, I generally felt like I was a lab rat in someone else's class on CMT

CHmm, if I insert the electrode here, how high will he - the rat- jump? If I

increase the voltage by 10 percent, will he jump 10 percent higher?)

No thanks. Not that the crew in Detroit was any better. They just want to " Chart

your progress. " Substitute " deterioration " for " progress " and voila, your

transformation into a pedigree rat is complete.

Now that I KNOW that there is nothing they can do for us, I no longer put up

with that. I tell my physician the parameters under which he or she can operate

and I feel free to veto unresearched " cures. "

The best thing you can do is to take positive steps by reading the

material yourself and you can be more in charge of your life.

Jerry

[Guest guest]

I agree, Jerry. I no longer tolerate " tests " and prefer to " run " my

own medicine. I consult with a researcher I know personally about

upcoming pain meds and do what I can to keep my weight and cholesterol

down. I'm also in a 12 week voice therapy program to try to maintain

the one vocal cord I have left. I'm trying to train Dragon Dictate but

it isn't easy and I'm wondering if doing it will wear out my voice.

Other than that, at my age and stage of CMT2a, I find the best way to

cope is to live life the best way I can. I keep involved and

interested in life and what's around me and contribute whatever and

whenever I can.

I think there's too little real knowledge about our CMT and too many

doctors repeating the same old over and over. I know when a doctor has

googled CMT as soon as I roll into their office and they tell me

something I could have written 20 years ago.

The description of CMT2a doesn't fit me at all but that's what the

genetic testing showed so that's what they look for. But, when you

consider that the different type descriptions seem to be sometimes

derived from family groups, who knows what other symptoms may be part

of another group with the same genetic marker.

Being followed " by a CMT specialist has only discouraged me.

" Charting " my deterioration does me no good. To my knowledge, no

treatment or anything else has ever come of it and I actually pity the

doctor who has to keep seeing CMT patients time and again and can do

nothing for us. No wonder he'd rather be on his racing bicycle

somewhere on a country road. So would I.

The research is gratifying but often doesn't help us now. It may help

our grandchildren down the road but in 68 years I've only seen real

advancement in bracing and a little in pain relief for some plus

genetic testing which might discourage some from having more CMT

children. Before anyone jumps on me for that, I truly believe there

are plenty of kids looking for good homes out there. You don't have to

bring yet another CMT affected child into the world. But, that is a

personal decision we each have to make.

I'll never have another EMG and will not tolerate doctors " trying "

things on me. I am my own best advocate and it's going to stay that

way as long as I can speak, write and/or think clearly.

On 27-Feb-11, at 2:23 PM, Jerry Walfish wrote:

> Sympathetic, maybe.

> Knowledgeable? I don't think so.. In fact, most of the time I have

> felt that I was paying these people for the privilege of running

> tests on me to expand their (limited) knowledge of CMT.

>

> In fact, I generally felt like I was a lab rat in someone else's

> class on CMT CHmm, if I insert the electrode here, how high will he

> - the rat- jump? If I increase the voltage by 10 percent, will he

> jump 10 percent higher?)

>

> No thanks. Not that the crew in Detroit was any better. They just

> want to " Chart your progress. " Substitute " deterioration " for

> " progress " and voila, your transformation into a pedigree rat is

> complete.

>

> Now that I KNOW that there is nothing they can do for us, I no

> longer put up with that. I tell my physician the parameters under

> which he or she can operate and I feel free to veto unresearched

> " cures. "

>

> The best thing you can do is to take positive steps by reading the

> material yourself and you can be more in charge of your life.

>

> Jerry

>

>

[Guest guest]

I have to say that I have had a good experience with my neurologist and team and

they are affiliated with the University of Connecticut and the MDA.

Dr. Felice is more knowledgeable about CMT than most medical professionals I

have met, and has great empathy. When he has requested that I do tests, he has

substantiated his requests with understandable reasoning. Before my NCV/EMG, I

warned him that if he hurt me I was likely to swear at him. He and his

assistant were both ok with that, and he was well aware that what he was doing

could be uncomfortable. He was honest about how long each portion was going to

take and didn't give me any if that 'just another minute' nonsense and then go

on forever. He did the minimum necessary to confirm what the general

neurologist had learned a few years earlier, and to reassure both of us that I

do indeed have some sort of Type 1, even though the DNA testing could not find

which one.

The clinic picks up the costs of the visits beyond what my insurance company

pays.

In addition to an exam, when I go for my annual visit, we discuss the latest

research. My visit also includes OT and PT evals and we discuss exercises and

adaptive devices that might be helpful. A few years ago they tested my hearing

at my request, and they have had me speak with a geneticist and an MDA

representative. I don't see the geneticist annually, but if I were to have

questions, they would have one stop by before I left.

My annual visits were in December, and one year when they had to cancel, they

let me know ahead of time and rescheduled my appointment for less than a month

later. Since winter weather can be unpredictable and I have to travel an hour

to get there, the year before last I asked if I could have the next appointment

in October, rather than going a whole year. That way I wouldn't have to deal

with the potential bad weather. It was not a problem, and now I go in the fall.

I find it refreshing that I do not have to tell any of the staff what CMT is, I

just have to tell them how I am doing, and what my concerns are, and let them

determine if they notice any changes from the previous year.

Note that I do not simply go to the clinic and leave it at that. I have a GP

that I see for regular old other stuff, a homeopath I see once a month, a

chiropractor every other week, PT as needed, and see a massage therapist for a

1/2 hr. once a month, too.

[Guest guest]

Gretchen:

After I read this post I felt like applauding. Word for word this post of yours

describes my experience exactly. Because my brother works for one of the extreme

huge donors to the UCLA medical center, I was once seen by the, “specialist,” at

UCLA medical Center.

My experience was word for word what you said: the specialist was overworked,

meaning I believe he was spread too thin to begin with, and then, he had to

squeeze me in. He did his neurological examination and then said yes, you have

CMT. And then he was prepared to walk out of the room.

Not only was he prepared to walk out of the room after saying that, he had not

listen to any questions that I had, nor had he really wondered if I had any

questions. I had to say, “wait a minute, I have still a few questions about my

medications that I'm taking…”

But the problem was there was a graduate student knocking on the door who

apparently had an appointment, or needed a consultation with this Dr., and as

the minutes when on this person became more and more insistent, and the Dr.

became more and more interested in leaving.

The people who take care of me at Cedars-Sinai, also Word for Word from your

post, are able to see me within the current or in the following week. Further

they did exactly as you described, they looked at me and said, “we can see you

have a real problem here, and we're going to take care of you. And they have.

For example they continuously take note of the progress that I've made in yoga,

and, after seeing the gait I was able to show them several weeks ago while

wearing un-braced regular shoes… for the first time in 17 years on the right

side at least… the doctor suggested that we find a place to present this!

I agree with you the people who are the real experts on CMT are those who have

it.

On Feb 27, 2011, at 10:02 AM, gfijig wrote:

> Once I stopped going to 'specialists' at academic institutions (i.e,. UCLA,

USC) and started seeing neurologists in private practice, I had no problems

getting appointments. At one point my family wanted to take me to Mayo; with my

senior year approaching, no way was that going to happen.

>

> The 'specialists' were usually overworked - or just spread too thin, their

time was limited due to teaching, research, publishing, clinics, etc.so

'appointment wait time' was long. I also found them to be emotionally and

socially very distant - seperating the disease from the person.

>

> Since then, ordinary neurologists in private practice, not encumbered by the

rigors of academia, have proved to be the best for me, however, no one, not any

of them, or the ones in academia were/are experts in CMT. In my experience I

found them to be much kinder, sympathetic and reasonable (listening to

me),accepting the person before them was real with CMT and therefore of help in

managing symptoms.

>

> In reality, no one, and I mean no one, on this planet is 'the CMT expert'. If

there was more people would be in treatment of some kind and

progression/symptoms would be reduced or absent and we wouldn't have such a

proliferation of CMT online forums, networks, groups, websites, bla bla bla.

>

> Those of us who have CMT are the 'real experts'.

>

> The researchers that are currently working on CMT hold promise - but that's

futuristic.

>

> If I need a neurologist, I know who to call and have no problems getting an

appointment that same week or next.

>

> Gretchen

>

>

[Guest guest]

My two cents...

I felt sad reading this stream.

If we do not help the researchers by volunteering, they will not be able to make

strides in improving the current body of knowledge, and therefore there will be

less " accurate " or " recent " information on CMT available to the medical public

to help those diagnosed with CMT.

And the advice we receive will continue to feel dated, or not applicable to

us...

I am an active volunteer with experts (yes I feel confident calling people who

have chosen to focus their careers on helping people with CMT experts) - I find

them compassionate, interested, and engaged with me. I have constant email

contact with my clinic, when I wish to read recent research I can obtain the

journal entries upon request, and I enjoy our engagement.

Perhaps it is because I am located in England, maybe that is why my experiences

differ...

I enjoy helping doctors, researchers and experts to learn, improve and

understand CMT. And I am proud that I can help in the process. And if that

means that I am a voluntary lab rat, so be it. My ratlike tendencies will

hopefully improve another's future.

Donna from London

CMT1A

www.beatinglimitations.com

Knowledgeable? I don't think so.. In fact, most of the time I have felt that I

was paying these people for the privilege of running tests on me to expand their

(limited) knowledge of CMT.

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