Re: Dr shopping and CMT

[Guest guest]

Bob, this posting should draw a lot of fire. INCOMING!!!

However, I can't agree totally that " Most drs hate patients and

parents who research and research online their diagnosis and what

needs to be done. " Some physicians do, some don't.

However, the problem with a lot of research - through the internet in

particular - is that the data one finds can be valid, invalid, or not-

yet-proven-either-way. And, not all valid data is applicable to all

CMT patients.

[Guest guest]

Sure, everyone loves to be worshipped, but - so far - my medical folks have

appreciated the fact that I'm not a walking ignoramus.

'Doctor shopping' is not necessarily a bad thing, and you accidentally agree by

stating, " You need to find a dr you like .. " The 'staying' with your doctor

depends on you, and you only.

[Guest guest]

What I meant to say is to trust your dr and not try to self diagnose

or come up with your own course of treatment. When someone goes from

dr to dr it seems like are looking for a dr who will comply with their

wishes for diagnosis and treatment.

[Guest guest]

Thank you Augie!

[Guest guest]

Every where you look people advocate that patients need to be well

informed when dealing with their doctors. Old school docs, seem to not

like patients who are informed. The doctors we have been seeing all are

pleased when we ask the tough questions and understand the answers. In

the long run it helps develop the trust between you and your doctor.

When I research on the internet I never take anything at face value. I

make my list of questions and thoughts and then take them to the

doc..and once again, as you stated so beautifully, " not all valid data

is applicable to all CMT patients. " This brings us again to the only

thing that seems to be common in all forms of CMT - there are no 2

patients who are the same!

Thank you for validating this!

[Guest guest]

When I go from dr. to dr....I looking for someone is willing to look into, have

a clue, be willing to learn about, be interested in CMT...so far at the age of

66...I found I haven't been that lucky!!

Geri

[Guest guest]

Hi,

May I voice my experience? I have CMT was diagnosed the at age 10.

Let me say I stopped going to the Doctor's that did all my surgery's when I got

to be an adult because I didn't have any confidence in them. I never found

another one to treat my CMT because there is basically nothing that can be done

for it. It effects everybody different and some more serious than others. I

myself at the age of 20 yrs. old had it worse than my father as far weakness and

the ability to use my hands. I also have 2 uncles on my fathers side that have

CMT and 1 cousin.

The Dr's I stopped going to put me in leg braces when I 15 yrs. old. They were

the metal ones. I wore those until I learned about the AFOs with articulating

ankles and I didn't have a Dr except my family Dr. so I told him what I needed

and he wrote me a prescriptions for them.

Till this day I still do not have a Dr that I see for my CMT.

I wanted to say that a few yrs back I had a medical problem and my Dr. kept

treating me for depression and I wasn't getting any better. I knew something

else was wrong so after going back to him over and over for about 3 mo. I

finally told him that if he didn't find out what was wrong with me I would find

a Dr that would. well he gave me a different kind of anti-depressant....go

figure.......well I left his office and made an appt. with and internal medicine

Dr. and went to him.

I told him what was going on and he drew a blood sample and in 3 day told me

what was wrong. I had a Thyroid problem and it would be better in about 2 to 3

mo. and low and behold I felt better for about 3 weeks. So I went back to the

Internist and he did another blood test and it came back higher than before. And

he did the smart thing. He said " I'm going to have to send you to a Dr that

knows more about Thyroid disease than I do " .

Within 2 hrs of the visit with the new Dr I was diagnosed with Graves Disease

and was treated for it. Yes I still go to my family Dr and he takes me serious

now when I tell him something is wrong. Doctor's don't know anything unless we

tell them. Unless we trust and have a good relationship with our Dr we may as

well fire them and find one that we have that with.

One more thing don't criticize how or what someone is doing for themselves or

their child unless you have walked in their shoes. Some people with CMT maybe

able to play sports and do lots of outside things. But I am one of the many that

can't I wear AFOs on both legs

and as I said before have worn braces since I was 15yrs. old.

I am hear to tell you that making it through each day is a chore. To me just

typing this is a big struggle since I can only type with 3 finger because of

them being so weak and not being able to straighten my finger's. But yes people

with CMT can live a long a healthy life, as long as they don't have other health

problems.

Think about what you say before you say it. Persons with CMT have feelings too.

Sylvia

[Guest guest]

Just to clear things up, you need to know that we have never doctor

shopped. We also have never self-diagnosed or proposed self-

treatments. What we are is well informed parents seeking the optimal

care for our child...regardless of where the road takes us.

We have had the same neurologist for 6 years. We have had the same pediatrician,

orthopedist, cardiologist, pulmonologist, gastroenterologist,

neuro-opthamologist and a few others since our son was born. So many people

over the years told us that AFOs might be something to consider that we finally

asked the neurologist. His response was - well they work in some cases, go see

the orthopedist. So, we did.

He said they wouldn't work for our son. We went to another doctor for a 2nd

opinion, he and his partner observed our child together and determined AFOs were

not appropriate. We backed off for a while and tried PT. The neurologist

referred us back to our ortho who now a few years later, said it was time for

surgery. We went for a 2nd opinion as any prudent parent would do. That is not

doctor shopping either.

You agreed in your post that CMT is different for each

patient...following a logical thought process, what would make you

think that doctors can't propose treatment for CMT patients

differently? I seriously am thrilled for you that AFOs made such a

difference in your life. I know many people personally who have

benefitted tremendously from them. Do you really think that I would

rather submit my child to long and painful surgeries and recuperations

rather than have him in school and walking if AFOs would have

helped? Not to mention the income I don't earn while I am home

taking care of him? Parents do what needs to be done. We explore

every option - but we do not doctor shop.

I feel obliged to also point out that in some cases, CMT can be

fatal. I am not certain where you get your info from but you

shouldn't be making blanket statements like that. It is very

misleading for people to read such a definitive statement, especially

for newly diagnosed patients or parents with newly diagnosed

children. Granted it is unusual, but it does happen and sadly it

seems to be happening a little more frequently than originally

thought.

By the way, it was my original post that stated that you needed to

find a doctor you trust and stick with them. Sometimes, you have to

interview several doctors before you find the one you can trust in.

[Guest guest]

As a person who has CMT & a person who interned at an MDA Clinic, I am PRO

doctor shopping.

Doctors come in all varieties and some are better for different times and needs.

The doctor who diagnosed me did not operate on me.

It took my mother (The dreaded " M " word) much doctor shopping to find a doctor

who was willing to diagnose me. I am glad she was one of those manipulative " M "

words who didn't have faith in my first doctors.

Because she was controlling & manipulative, I got a diagnosis & the much needed

surgery that enabled me to walk. I did not wear braces until I turned 30.

Chris

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[Guest guest]

Asking tough questions is fine as long as you don't already have the

answers you want to hear and go from dr to dr till you hear the answer

you want. Trust your dr and allow him to treat your child. There are

numerous examples of people who have shopped Drs from Elvis to Rush

Limbaugh often with bad outcomes. Trust your dr and seek out

specialized hospitals such as the Shriner's who have treated many kids

with CMT and other forms of MD.

Bob

[Guest guest]

Geri,

That many years and still no Dr lke that Sounds like me. I have a Dr. now who

thought CMT had to do with the lungs. Disgusting.

Dawn

[Guest guest]

Thank you for your post! You eloquently stated what I was trying to

say.

[Guest guest]

I hear ya!!!!!!!

[Guest guest]

In regards to CMT being non-fatal, I was told this by a CMT researcher

on the MDA staff who teaches at the local med school and is a DR. This

was about 3 years ago and he stated much the same on the telethon that

year. Not sure if things have changed since then but that was my source.

AFOs have helped me a lot and have helped most other CMT patients

that I know. I know there are good AFOs and bad AFOs. I have had

both. But I kept looking for some that worked for me. I never once

thought about asking the doctor to Rx me a power wheelchair, much less be

excited on the prospect of getting one.

Bob

[Guest guest]

Geri,

I have been through 5 different Children's Hospitals in the United States at

their Neurology Departments, including Boston's Children's Hospital, looking for

answers. The last neurologist I visited in Florida told me in front of my son:

" There is not much to be done. There is no cure for this. Bring your son in

twelve months, I want to see how worse he is getting. "

After that, I bought myself a huge bag of chocolate and a new cell phone to my

son..... just to overcome his unethical comment.

[Guest guest]

The neurologist in Florida made an unethical comment? I think not.

Realistic but perhaps somewhat harsh? Yes. Something you didn't

want to hear? Most definitely.

And, the alleged comment was made in front of your child? How novel -

keeping the patient informed of his true condition.

Rather than the unpleasant truth, would unwarranted hope would be the

unethical action?

[Guest guest]

I had to do some Dr. shopping years back due to a nagging and painful

right hip and lower back pain that wouldn't stop. I was trying to get

help, treatment and understanding of what was going on. I started with 2

internists, followed by two orthopedists, 1 neurosurgeon, one neurologist, 1

pain management doc, and an entire 'center for experimental pain control'.

Everyone told me something different. Did I want to hear any of it? Yes, you

bet, all of it, because it gave me a variety of options once I fully understood

what the problem was.

After connecting with the 'right' spine orthopedist who took additional X rays

and MRIs, I began a very conservative treatment including physical therapy and

medication. At the end of a long road (2 years), I chose to undergo a spinal

fusion in my lower back that was 100% successful. That was almost 6 years ago

and I am in great shape, with no back problems or pain whatsoever. I have since

used that particular doctor/surgeon in asking for 'the best doctor' for specific

care, because I trust him totally.

Sometimes Dr. shopping can be a positive with good outcomes like

mine; sometimes not, with confusion and surgeries way before all

other avenues have been explored.

If I ever have doubts or questions about what one doc says, I will go

on for one or two other opinions, asking many questions, accepting outlined

treatment plans, and making informed choices with the best

information possible after long periods of quiet and meditation.

Gretchen

[Guest guest]

How absolutely cruel your statement is. Nothing justifies a doctor

speaking like that to a parent or a patient. You don't tell a child

that he needs to come back in 12 months so you can see how much worse

he is doing...that's just not right.

There is a fine line between being a jerk and being a realist. That

doctor crossed that line IMO. As parents of kids with CMT we are

more than aware that things only get worse, not better...but my sons

doctors all have the decency just to say " See you back in 3 months

buddy! " My son knows what that means...but it's not anxiety

provoking for the next 3 months. He knows he's getting worse, and he

knows the docs all need to touch base...but they don't throw it in

his face. They are also realistic enough to listen when he gets

frustrated and they tell him they are sorry they don't have the cure

yet...but that they are doing everything they can to help him cope

with his systems.

As with everything in life, there is a way to say something, and a

way not to say something.

Maybe the word " unethical " is what set you off. OK - so not

unethical - how's unprofressional, uncaring and inhuman sound for

that doc?

>

> The neurologist in Florida made an unethical comment? I think not.

> Realistic but perhaps somewhat harsh? Yes. Something you didn't

> want to hear? Most definitely.

>

> And, the alleged comment was made in front of your child? How

novel -

> keeping the patient informed of his true condition.

>

> Rather than the unpleasant truth, would unwarranted hope would be

the

> unethical action?

>

[Guest guest]

,

I believe some here are making unwarranted assumptions.

For example, you assume that the 'inhuman' (inhumane might be a

better choice though) neurologist said EXACTLY AND PRECISELY what was

alleged to have been said.

I was not there and you were not there to hear the exact words said.

We are relying on a hear-say statement from a distraught parent. I

have no doubt that the mother in question understood the physician's

statement that way.

I know from my own personal experience that all too many patients and

family members hear only a portion of what they are told; comprehend

only a portion of that; and, filter the rest into words they

understand.

For example, the statement " Come back in a year to see how your

condition has progressed " , means effectively the same thing as " see

how much worse it has become " . Sounds better though.

And, since we were not there, the neurologist could have said EXACTLY

what the mother alleged. Circumstances, however, may demand a

certain amount of bluntness to get one's point understood.

[Guest guest]

You are so right! Hope you never saw that doc again!

[Guest guest]

Just in response to this subject; how would someone feel who had cancer and the

doctor says lets make an appt for 3 months from now to see if you are still

alive. I know that is drastic, but children also process things differently than

we do. I was told that I would never get better and would only end up in a wheel

chair and I was in my 20's at the time and it was shocking and sounded cold to

me.

I was also not given any positive information to try to hold onto or to try to

better my condition. Just like in relationships and marriages, we learn the

rules of communication and doctors should not be excluded from those.

Jackie

[Guest guest]

The 'placebo effect' is real, so perhaps this doctor just hasn't been getting

enough 'whoopie'. ;-) Nevertheless - and I could desperately be wrong here -

having been in this same situation myself as a child, I suspect the parent's

feelings were hurt more than the child's, given a parent's natural protective

instinct.

However, as an ADULT, I expect to be informed of every little detail - something

doctors, in general, just hate to do.

There's always room for hope.

[Guest guest]

Hi ,

Your post made me think of my own doctor's visit today. I received the

results of my genetic testing today, and as usual was greeted by a doc and a

group of students - this I do not mind. I like to talk about what I do to

manage things and how I learned I had CMT anyway, why not help others to

learn in the process?

So my doctor said " as expected the test confirms the EMG. How often would

you like to be seen? " .

How to answer that question? So I said that as far as I was concerned this

was a monitoring visit, and that it was the hospital's job now that my

confirmation was in to loop me into any trials they were doing, which he

agreed.

I then optimistically said to the researcher in the room " well and since 1A

is related to myelin and since there is a lot of work underway about myelin,

these visits will be unnecessary in 5 to 10 years when you have this figured

out " - the room laughed, but then the doctor said that in all likelihood 5

years was optimistic, but surely within the next 20 they would have some

major advance... Or at least he hoped so - I said me too.

Your doctor is right in that they monitor to make sure things are not

worsening. But you should consider finding someone who has a bit of

optimism that research today will lead to treatments of the future.

Best wishes,

Donna from London