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Re: Jeff Maciejewski

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,

I realize that you're probably overwhelmed as it is, but I personally

couldn't let that kind of treatment by a physician go un-addressed. If I

had experienced such un-professional treatment, I'd be writing a letter to

the Hospital Board of Trustees. It would probably be futile, but if these

types of indiscretions are never reported, there is no history for the

hospital to use to take action even if they want to.

Jerry Cash

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Dear Dear and Jeff,

My heart goes out to you both. I am so sorry that Jeff had to go

through this. I have also been through the same thing with 2 doctors

so I know the humilation that Jeff feels. It is so uncalled for and

very devasating to have it happen to you. I know that I cried

everytime I tried to tell someone what those doctors did to me. One

of those doctors were at a Medical University Clinic. Please know

that there are other doctors out there who aren't that bad. I didn't

believe it until recently but it's true. Don't give up, keep your

head high, and fight for your rights and your health. I am also glad

you didn't pay that jerk. I wasn't as smart.

God Bless,

Belinda

> Hi Jean and Chrissie-

>

> Disheartening to say the least. First of all, he didn't get to see

> Jankovic. He saw another doctor who had the most godawful bedside

manner.

> It was obvious that he hadn't reviewed Jeffs file at all. He came

in

> there with this " you shut up, you're just the patient " attitude.

He told

> Jeff that he didn't have MSA, and THEN started reviewing his file

in front

> of him...started to do some SERIOUS backpedaling. He decided that

Jeff

> needed to " start from scratch " , and Jeff told the doc that he

wasn't

> goingto repeat a whole bunch of tests he's already been through

several

> times. The doctor ordered a bunch of tests for Jeff, including a

sleep

> study and some specialized EMG's, but he wanted to do it right

then, and

> have Jeff admitted to the hospital. Jeff tried to explain that

their

> hospital was out of network, and that he would want to do the

testing

> somewhere closer to home (Houston is 7 hours away). The doctor

said,

> " Well, I guess you're just going to leave AMA " !!!! and stormed out

the

> door. Thank God for Dr. Wang, the intern who did Jeff's original

workup in

> December. She did the preconsult and workup on Wednesday, and was

able to

> get Jeff calmed down somewhat after his interview with this doc.

THEN he

> gives Jeff a bill for $855 for the visit. Now realize that on our

first

> visit, Jankovic spent at least 30 minutes talking to Jeff. This

yahoo was

> in there less than 10! And they did the EXACT same workup. Dr.

J's fee

> was $325. Jeff told the cashier that there was no way he was going

to pay

> $855 for the abuse he got from that doctor. The doctor came out to

the

> cashier's desk, scratched out $855, wrote in N/C and told Jeff (in

front of

> everyone) that he never wanted to see him again!!

>

> Jeff got in from Houston Wednesday night and was COMPLETELY wiped

out and

> demoralized. He could barely function yesterday and last night was

so

> upset that he threw all his meds in the trash (he retrieved them a

little

> later) He's not eating well, he's not sleeping well at all, so he

can't

> get past this. It seems in the week since his doctor actually came

out and

> told him he was dying, that he feels this futility in everything he

does.

> And frankly, I don't know how to handle it. What do I tell him?

A big

> part of me wants to scream at him and tell him to fight this with

> everything he's got, and the other small part that sees him suffer

wants me

> to tell him it's OK, it's your body, if it's too much for you then

just let

> go.....he looks to me for the validation of his actions, and I

don't even

> know what those actions should be!!! He's a very proud man, does

not

> accept help graciously. What's it going to be like for him when he

can't

> drive, can't walk, can't make it to the bathroom on his own.

>

> He was better (spirit-wise) this morning. He went in to work for a

little

> while, which is encouraging. He just loves this support group,

even though

> he doesn't post. He reads the experiences everyone shares and it

makes

> him feel so much better to know that there are people out there who

really

> UNDERSTAND. Thank you all for that blessing in our lives!!

>

> I want to get you all a list of some of the tests the doctor wants

to

> run....maybe you can shed some light on them. Will post them later.

>

> Thanks for your thoughts, M.

>

>

> Re: Jeff Maciejewski

>

> ,

> Wondering how Jeff made out with his doctor's visit?.

> Jean & Chrissie

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe@y...

>

>

>

>

>

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Guest guest

Dear Dear and Jeff,

My heart goes out to you both. I am so sorry that Jeff had to go

through this. I have also been through the same thing with 2 doctors

so I know the humilation that Jeff feels. It is so uncalled for and

very devasating to have it happen to you. I know that I cried

everytime I tried to tell someone what those doctors did to me. One

of those doctors were at a Medical University Clinic. Please know

that there are other doctors out there who aren't that bad. I didn't

believe it until recently but it's true. Don't give up, keep your

head high, and fight for your rights and your health. I am also glad

you didn't pay that jerk. I wasn't as smart.

God Bless,

Belinda

> Hi Jean and Chrissie-

>

> Disheartening to say the least. First of all, he didn't get to see

> Jankovic. He saw another doctor who had the most godawful bedside

manner.

> It was obvious that he hadn't reviewed Jeffs file at all. He came

in

> there with this " you shut up, you're just the patient " attitude.

He told

> Jeff that he didn't have MSA, and THEN started reviewing his file

in front

> of him...started to do some SERIOUS backpedaling. He decided that

Jeff

> needed to " start from scratch " , and Jeff told the doc that he

wasn't

> goingto repeat a whole bunch of tests he's already been through

several

> times. The doctor ordered a bunch of tests for Jeff, including a

sleep

> study and some specialized EMG's, but he wanted to do it right

then, and

> have Jeff admitted to the hospital. Jeff tried to explain that

their

> hospital was out of network, and that he would want to do the

testing

> somewhere closer to home (Houston is 7 hours away). The doctor

said,

> " Well, I guess you're just going to leave AMA " !!!! and stormed out

the

> door. Thank God for Dr. Wang, the intern who did Jeff's original

workup in

> December. She did the preconsult and workup on Wednesday, and was

able to

> get Jeff calmed down somewhat after his interview with this doc.

THEN he

> gives Jeff a bill for $855 for the visit. Now realize that on our

first

> visit, Jankovic spent at least 30 minutes talking to Jeff. This

yahoo was

> in there less than 10! And they did the EXACT same workup. Dr.

J's fee

> was $325. Jeff told the cashier that there was no way he was going

to pay

> $855 for the abuse he got from that doctor. The doctor came out to

the

> cashier's desk, scratched out $855, wrote in N/C and told Jeff (in

front of

> everyone) that he never wanted to see him again!!

>

> Jeff got in from Houston Wednesday night and was COMPLETELY wiped

out and

> demoralized. He could barely function yesterday and last night was

so

> upset that he threw all his meds in the trash (he retrieved them a

little

> later) He's not eating well, he's not sleeping well at all, so he

can't

> get past this. It seems in the week since his doctor actually came

out and

> told him he was dying, that he feels this futility in everything he

does.

> And frankly, I don't know how to handle it. What do I tell him?

A big

> part of me wants to scream at him and tell him to fight this with

> everything he's got, and the other small part that sees him suffer

wants me

> to tell him it's OK, it's your body, if it's too much for you then

just let

> go.....he looks to me for the validation of his actions, and I

don't even

> know what those actions should be!!! He's a very proud man, does

not

> accept help graciously. What's it going to be like for him when he

can't

> drive, can't walk, can't make it to the bathroom on his own.

>

> He was better (spirit-wise) this morning. He went in to work for a

little

> while, which is encouraging. He just loves this support group,

even though

> he doesn't post. He reads the experiences everyone shares and it

makes

> him feel so much better to know that there are people out there who

really

> UNDERSTAND. Thank you all for that blessing in our lives!!

>

> I want to get you all a list of some of the tests the doctor wants

to

> run....maybe you can shed some light on them. Will post them later.

>

> Thanks for your thoughts, M.

>

>

> Re: Jeff Maciejewski

>

> ,

> Wondering how Jeff made out with his doctor's visit?.

> Jean & Chrissie

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe@y...

>

>

>

>

>

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Share on other sites

Guest guest

Dear Dear and Jeff,

My heart goes out to you both. I am so sorry that Jeff had to go

through this. I have also been through the same thing with 2 doctors

so I know the humilation that Jeff feels. It is so uncalled for and

very devasating to have it happen to you. I know that I cried

everytime I tried to tell someone what those doctors did to me. One

of those doctors were at a Medical University Clinic. Please know

that there are other doctors out there who aren't that bad. I didn't

believe it until recently but it's true. Don't give up, keep your

head high, and fight for your rights and your health. I am also glad

you didn't pay that jerk. I wasn't as smart.

God Bless,

Belinda

> Hi Jean and Chrissie-

>

> Disheartening to say the least. First of all, he didn't get to see

> Jankovic. He saw another doctor who had the most godawful bedside

manner.

> It was obvious that he hadn't reviewed Jeffs file at all. He came

in

> there with this " you shut up, you're just the patient " attitude.

He told

> Jeff that he didn't have MSA, and THEN started reviewing his file

in front

> of him...started to do some SERIOUS backpedaling. He decided that

Jeff

> needed to " start from scratch " , and Jeff told the doc that he

wasn't

> goingto repeat a whole bunch of tests he's already been through

several

> times. The doctor ordered a bunch of tests for Jeff, including a

sleep

> study and some specialized EMG's, but he wanted to do it right

then, and

> have Jeff admitted to the hospital. Jeff tried to explain that

their

> hospital was out of network, and that he would want to do the

testing

> somewhere closer to home (Houston is 7 hours away). The doctor

said,

> " Well, I guess you're just going to leave AMA " !!!! and stormed out

the

> door. Thank God for Dr. Wang, the intern who did Jeff's original

workup in

> December. She did the preconsult and workup on Wednesday, and was

able to

> get Jeff calmed down somewhat after his interview with this doc.

THEN he

> gives Jeff a bill for $855 for the visit. Now realize that on our

first

> visit, Jankovic spent at least 30 minutes talking to Jeff. This

yahoo was

> in there less than 10! And they did the EXACT same workup. Dr.

J's fee

> was $325. Jeff told the cashier that there was no way he was going

to pay

> $855 for the abuse he got from that doctor. The doctor came out to

the

> cashier's desk, scratched out $855, wrote in N/C and told Jeff (in

front of

> everyone) that he never wanted to see him again!!

>

> Jeff got in from Houston Wednesday night and was COMPLETELY wiped

out and

> demoralized. He could barely function yesterday and last night was

so

> upset that he threw all his meds in the trash (he retrieved them a

little

> later) He's not eating well, he's not sleeping well at all, so he

can't

> get past this. It seems in the week since his doctor actually came

out and

> told him he was dying, that he feels this futility in everything he

does.

> And frankly, I don't know how to handle it. What do I tell him?

A big

> part of me wants to scream at him and tell him to fight this with

> everything he's got, and the other small part that sees him suffer

wants me

> to tell him it's OK, it's your body, if it's too much for you then

just let

> go.....he looks to me for the validation of his actions, and I

don't even

> know what those actions should be!!! He's a very proud man, does

not

> accept help graciously. What's it going to be like for him when he

can't

> drive, can't walk, can't make it to the bathroom on his own.

>

> He was better (spirit-wise) this morning. He went in to work for a

little

> while, which is encouraging. He just loves this support group,

even though

> he doesn't post. He reads the experiences everyone shares and it

makes

> him feel so much better to know that there are people out there who

really

> UNDERSTAND. Thank you all for that blessing in our lives!!

>

> I want to get you all a list of some of the tests the doctor wants

to

> run....maybe you can shed some light on them. Will post them later.

>

> Thanks for your thoughts, M.

>

>

> Re: Jeff Maciejewski

>

> ,

> Wondering how Jeff made out with his doctor's visit?.

> Jean & Chrissie

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe@y...

>

>

>

>

>

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Guest guest

Greetings and Jeff!

Jeff, I'm really writing this to you. You're wife just happens to be the

courier for this note. But it's just me to you, okay?

First, let's pretend you are at work and face this type of problem. It's

overwhelming. Where do you start? By trying to tackle the whole thing at

once? Nope. You find one corner of the puzzle that you can solve, work on

it, step back, and see if you can solve other pieces. So, let me suggest a

way to do just that.

First of all, it is EXTREMELY important that you resolve your sleep

problems. Severe sleep apnea (or other sleep problems) causes a severe

strain on your central nervous system. Believe me. I know. I've used a

CPAP / BiPAP unit for more than six years now. I would NOT be alive without

it. And my symptoms get MUCH worse if I sleep poorly.

Let's see if that is a corner of the whole puzzle we can solve. I hope that

if you can get your sleep problems under control, you will be better able to

work through the other problems.

How to get started on solving this? First of all, your PCP should be able

to refer you for a sleep study. Sometimes they are reluctant to do so,

because of the cost. If your PCP heads down that path, be insistent, and

note that it is now impacting your ability to drive, and worry that it will

result in a serious accident, even death. If you PCP doesn't listen to

that, then change PCPs. If they are not worried about the resulting

litigation they should not be in the practice of medicine - or anything

else, for that matter.

How can getting the sleep test help? It's quite likely from what you

describe you are suffering SEVERE sleep deprivation. This is WAY beyond

just missing a little bit of sleep. Remember, there is a reason that sleep

deprivation is used as a form of torture throughout the world. It is

effective. It is simple. And it will destroy the person being tortured.

All without leaving a mark on that person.

Here are a couple of site that discuss sleep apnea:

http://health.yahoo.com/health/dc/000811/0.html

http://www.cpapman.com/disorder.htm

Please get on this immediately! It is that important to your health and to

your family.

Regards,

=jbf=

B. Fisher

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Guest guest

Greetings and Jeff!

Jeff, I'm really writing this to you. You're wife just happens to be the

courier for this note. But it's just me to you, okay?

First, let's pretend you are at work and face this type of problem. It's

overwhelming. Where do you start? By trying to tackle the whole thing at

once? Nope. You find one corner of the puzzle that you can solve, work on

it, step back, and see if you can solve other pieces. So, let me suggest a

way to do just that.

First of all, it is EXTREMELY important that you resolve your sleep

problems. Severe sleep apnea (or other sleep problems) causes a severe

strain on your central nervous system. Believe me. I know. I've used a

CPAP / BiPAP unit for more than six years now. I would NOT be alive without

it. And my symptoms get MUCH worse if I sleep poorly.

Let's see if that is a corner of the whole puzzle we can solve. I hope that

if you can get your sleep problems under control, you will be better able to

work through the other problems.

How to get started on solving this? First of all, your PCP should be able

to refer you for a sleep study. Sometimes they are reluctant to do so,

because of the cost. If your PCP heads down that path, be insistent, and

note that it is now impacting your ability to drive, and worry that it will

result in a serious accident, even death. If you PCP doesn't listen to

that, then change PCPs. If they are not worried about the resulting

litigation they should not be in the practice of medicine - or anything

else, for that matter.

How can getting the sleep test help? It's quite likely from what you

describe you are suffering SEVERE sleep deprivation. This is WAY beyond

just missing a little bit of sleep. Remember, there is a reason that sleep

deprivation is used as a form of torture throughout the world. It is

effective. It is simple. And it will destroy the person being tortured.

All without leaving a mark on that person.

Here are a couple of site that discuss sleep apnea:

http://health.yahoo.com/health/dc/000811/0.html

http://www.cpapman.com/disorder.htm

Please get on this immediately! It is that important to your health and to

your family.

Regards,

=jbf=

B. Fisher

Link to comment
Share on other sites

Guest guest

Greetings and Jeff!

Jeff, I'm really writing this to you. You're wife just happens to be the

courier for this note. But it's just me to you, okay?

First, let's pretend you are at work and face this type of problem. It's

overwhelming. Where do you start? By trying to tackle the whole thing at

once? Nope. You find one corner of the puzzle that you can solve, work on

it, step back, and see if you can solve other pieces. So, let me suggest a

way to do just that.

First of all, it is EXTREMELY important that you resolve your sleep

problems. Severe sleep apnea (or other sleep problems) causes a severe

strain on your central nervous system. Believe me. I know. I've used a

CPAP / BiPAP unit for more than six years now. I would NOT be alive without

it. And my symptoms get MUCH worse if I sleep poorly.

Let's see if that is a corner of the whole puzzle we can solve. I hope that

if you can get your sleep problems under control, you will be better able to

work through the other problems.

How to get started on solving this? First of all, your PCP should be able

to refer you for a sleep study. Sometimes they are reluctant to do so,

because of the cost. If your PCP heads down that path, be insistent, and

note that it is now impacting your ability to drive, and worry that it will

result in a serious accident, even death. If you PCP doesn't listen to

that, then change PCPs. If they are not worried about the resulting

litigation they should not be in the practice of medicine - or anything

else, for that matter.

How can getting the sleep test help? It's quite likely from what you

describe you are suffering SEVERE sleep deprivation. This is WAY beyond

just missing a little bit of sleep. Remember, there is a reason that sleep

deprivation is used as a form of torture throughout the world. It is

effective. It is simple. And it will destroy the person being tortured.

All without leaving a mark on that person.

Here are a couple of site that discuss sleep apnea:

http://health.yahoo.com/health/dc/000811/0.html

http://www.cpapman.com/disorder.htm

Please get on this immediately! It is that important to your health and to

your family.

Regards,

=jbf=

B. Fisher

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Guest guest

Dear and Jeff,

sorry to hear about your worse condition Jeff. Seems that the patients are getting younger and younger. Allthough it is also possible that MSA is getting better known. Anyway, Jeff, it looks like that you struggle with the same problem my wife Anne does, namely, to give the disease a name. Giving the animal a name (bad translation of dutch common saying?) is important to explain to friends why you are not able to do the things that you were used to. And believe me, I know how often Anne was pissed off when the doctors suggested another illness. Then she could startover again explaining to relatives and friends how she was doing and how the propositions were. Finally she is diagnosed with PAF, pure autonomic failure and finally she accepts that giving the animal a name is not important, but how do you treat the symptoms and make the best of your life. PAF is less deadly(= life expectance is longer) and we both realize that now we have the best years of our lifes and now is the time to enjoy life while we can.

Jeff and , read and ask as much as possible on the list, then here are no doctors, but the most experience with this disease and treatments you will ever find.

God bless you and you are in our hearts.

Timo & Anne

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Guest guest

Dear and Jeff,

sorry to hear about your worse condition Jeff. Seems that the patients are getting younger and younger. Allthough it is also possible that MSA is getting better known. Anyway, Jeff, it looks like that you struggle with the same problem my wife Anne does, namely, to give the disease a name. Giving the animal a name (bad translation of dutch common saying?) is important to explain to friends why you are not able to do the things that you were used to. And believe me, I know how often Anne was pissed off when the doctors suggested another illness. Then she could startover again explaining to relatives and friends how she was doing and how the propositions were. Finally she is diagnosed with PAF, pure autonomic failure and finally she accepts that giving the animal a name is not important, but how do you treat the symptoms and make the best of your life. PAF is less deadly(= life expectance is longer) and we both realize that now we have the best years of our lifes and now is the time to enjoy life while we can.

Jeff and , read and ask as much as possible on the list, then here are no doctors, but the most experience with this disease and treatments you will ever find.

God bless you and you are in our hearts.

Timo & Anne

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Guest guest

Greetings ?

Why the EMGs? This is a guess, but I think doctors want to see if there is

nerve conduction impairment between the brain and the various parts of the

body. This is often, but not always caused by multiple sclerosis or other

disorders that cause problems with the peripheral nervous system.

Regards,

=jbf=

B. Fisher

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Guest guest

Greetings ?

Why the EMGs? This is a guess, but I think doctors want to see if there is

nerve conduction impairment between the brain and the various parts of the

body. This is often, but not always caused by multiple sclerosis or other

disorders that cause problems with the peripheral nervous system.

Regards,

=jbf=

B. Fisher

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Share on other sites

Guest guest

Greetings ?

Why the EMGs? This is a guess, but I think doctors want to see if there is

nerve conduction impairment between the brain and the various parts of the

body. This is often, but not always caused by multiple sclerosis or other

disorders that cause problems with the peripheral nervous system.

Regards,

=jbf=

B. Fisher

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Share on other sites

Guest guest

Hello and Jeff:

You certainly have had a terrible experience with the doctor, and I guess

all those afflicted (and sometimes their caretakers) feel like " throwing in

the towel " at times. That's okay. And we are all dying, that's a sure

thing. I tell Sam that I do the best I can with him, and that I know he

would do the same for me if he had to, and then I always add to that last

phrase with a laugh, " but incompetently. " He agrees with that. It'[s

very hard for a man, I guess. Don't give up--get what you can out of each

day, both of you. Lou R.At 11:14 AM 3/8/2002 -0500, you wrote:

>Hi Jean and Chrissie-

>

>Disheartening to say the least. First of all, he didn't get to see

>Jankovic. He saw another doctor who had the most godawful bedside manner.

> It was obvious that he hadn't reviewed Jeffs file at all. He came in

>there with this " you shut up, you're just the patient " attitude. He told

>Jeff that he didn't have MSA, and THEN started reviewing his file in front

>of him...started to do some SERIOUS backpedaling. He decided that Jeff

>needed to " start from scratch " , and Jeff told the doc that he wasn't

>goingto repeat a whole bunch of tests he's already been through several

>times. The doctor ordered a bunch of tests for Jeff, including a sleep

>study and some specialized EMG's, but he wanted to do it right then, and

>have Jeff admitted to the hospital. Jeff tried to explain that their

>hospital was out of network, and that he would want to do the testing

>somewhere closer to home (Houston is 7 hours away). The doctor said,

> " Well, I guess you're just going to leave AMA " !!!! and stormed out the

>door. Thank God for Dr. Wang, the intern who did Jeff's original workup in

>December. She did the preconsult and workup on Wednesday, and was able to

>get Jeff calmed down somewhat after his interview with this doc. THEN he

>gives Jeff a bill for $855 for the visit. Now realize that on our first

>visit, Jankovic spent at least 30 minutes talking to Jeff. This yahoo was

>in there less than 10! And they did the EXACT same workup. Dr. J's fee

>was $325. Jeff told the cashier that there was no way he was going to pay

>$855 for the abuse he got from that doctor. The doctor came out to the

>cashier's desk, scratched out $855, wrote in N/C and told Jeff (in front of

>everyone) that he never wanted to see him again!!

>

>Jeff got in from Houston Wednesday night and was COMPLETELY wiped out and

>demoralized. He could barely function yesterday and last night was so

>upset that he threw all his meds in the trash (he retrieved them a little

>later) He's not eating well, he's not sleeping well at all, so he can't

>get past this. It seems in the week since his doctor actually came out and

>told him he was dying, that he feels this futility in everything he does.

> And frankly, I don't know how to handle it. What do I tell him? A big

>part of me wants to scream at him and tell him to fight this with

>everything he's got, and the other small part that sees him suffer wants me

>to tell him it's OK, it's your body, if it's too much for you then just let

>go.....he looks to me for the validation of his actions, and I don't even

>know what those actions should be!!! He's a very proud man, does not

>accept help graciously. What's it going to be like for him when he can't

>drive, can't walk, can't make it to the bathroom on his own.

>

>He was better (spirit-wise) this morning. He went in to work for a little

>while, which is encouraging. He just loves this support group, even though

>he doesn't post. He reads the experiences everyone shares and it makes

>him feel so much better to know that there are people out there who really

>UNDERSTAND. Thank you all for that blessing in our lives!!

>

>I want to get you all a list of some of the tests the doctor wants to

>run....maybe you can shed some light on them. Will post them later.

>

>Thanks for your thoughts, M.

>

>

> Re: Jeff Maciejewski

>

>,

>Wondering how Jeff made out with his doctor's visit?.

>Jean & Chrissie

>

>If you do not wish to belong to shydrager, you may

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>

Link to comment
Share on other sites

Guest guest

Hello and Jeff:

You certainly have had a terrible experience with the doctor, and I guess

all those afflicted (and sometimes their caretakers) feel like " throwing in

the towel " at times. That's okay. And we are all dying, that's a sure

thing. I tell Sam that I do the best I can with him, and that I know he

would do the same for me if he had to, and then I always add to that last

phrase with a laugh, " but incompetently. " He agrees with that. It'[s

very hard for a man, I guess. Don't give up--get what you can out of each

day, both of you. Lou R.At 11:14 AM 3/8/2002 -0500, you wrote:

>Hi Jean and Chrissie-

>

>Disheartening to say the least. First of all, he didn't get to see

>Jankovic. He saw another doctor who had the most godawful bedside manner.

> It was obvious that he hadn't reviewed Jeffs file at all. He came in

>there with this " you shut up, you're just the patient " attitude. He told

>Jeff that he didn't have MSA, and THEN started reviewing his file in front

>of him...started to do some SERIOUS backpedaling. He decided that Jeff

>needed to " start from scratch " , and Jeff told the doc that he wasn't

>goingto repeat a whole bunch of tests he's already been through several

>times. The doctor ordered a bunch of tests for Jeff, including a sleep

>study and some specialized EMG's, but he wanted to do it right then, and

>have Jeff admitted to the hospital. Jeff tried to explain that their

>hospital was out of network, and that he would want to do the testing

>somewhere closer to home (Houston is 7 hours away). The doctor said,

> " Well, I guess you're just going to leave AMA " !!!! and stormed out the

>door. Thank God for Dr. Wang, the intern who did Jeff's original workup in

>December. She did the preconsult and workup on Wednesday, and was able to

>get Jeff calmed down somewhat after his interview with this doc. THEN he

>gives Jeff a bill for $855 for the visit. Now realize that on our first

>visit, Jankovic spent at least 30 minutes talking to Jeff. This yahoo was

>in there less than 10! And they did the EXACT same workup. Dr. J's fee

>was $325. Jeff told the cashier that there was no way he was going to pay

>$855 for the abuse he got from that doctor. The doctor came out to the

>cashier's desk, scratched out $855, wrote in N/C and told Jeff (in front of

>everyone) that he never wanted to see him again!!

>

>Jeff got in from Houston Wednesday night and was COMPLETELY wiped out and

>demoralized. He could barely function yesterday and last night was so

>upset that he threw all his meds in the trash (he retrieved them a little

>later) He's not eating well, he's not sleeping well at all, so he can't

>get past this. It seems in the week since his doctor actually came out and

>told him he was dying, that he feels this futility in everything he does.

> And frankly, I don't know how to handle it. What do I tell him? A big

>part of me wants to scream at him and tell him to fight this with

>everything he's got, and the other small part that sees him suffer wants me

>to tell him it's OK, it's your body, if it's too much for you then just let

>go.....he looks to me for the validation of his actions, and I don't even

>know what those actions should be!!! He's a very proud man, does not

>accept help graciously. What's it going to be like for him when he can't

>drive, can't walk, can't make it to the bathroom on his own.

>

>He was better (spirit-wise) this morning. He went in to work for a little

>while, which is encouraging. He just loves this support group, even though

>he doesn't post. He reads the experiences everyone shares and it makes

>him feel so much better to know that there are people out there who really

>UNDERSTAND. Thank you all for that blessing in our lives!!

>

>I want to get you all a list of some of the tests the doctor wants to

>run....maybe you can shed some light on them. Will post them later.

>

>Thanks for your thoughts, M.

>

>

> Re: Jeff Maciejewski

>

>,

>Wondering how Jeff made out with his doctor's visit?.

>Jean & Chrissie

>

>If you do not wish to belong to shydrager, you may

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>

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Guest guest

Hello and Jeff:

You certainly have had a terrible experience with the doctor, and I guess

all those afflicted (and sometimes their caretakers) feel like " throwing in

the towel " at times. That's okay. And we are all dying, that's a sure

thing. I tell Sam that I do the best I can with him, and that I know he

would do the same for me if he had to, and then I always add to that last

phrase with a laugh, " but incompetently. " He agrees with that. It'[s

very hard for a man, I guess. Don't give up--get what you can out of each

day, both of you. Lou R.At 11:14 AM 3/8/2002 -0500, you wrote:

>Hi Jean and Chrissie-

>

>Disheartening to say the least. First of all, he didn't get to see

>Jankovic. He saw another doctor who had the most godawful bedside manner.

> It was obvious that he hadn't reviewed Jeffs file at all. He came in

>there with this " you shut up, you're just the patient " attitude. He told

>Jeff that he didn't have MSA, and THEN started reviewing his file in front

>of him...started to do some SERIOUS backpedaling. He decided that Jeff

>needed to " start from scratch " , and Jeff told the doc that he wasn't

>goingto repeat a whole bunch of tests he's already been through several

>times. The doctor ordered a bunch of tests for Jeff, including a sleep

>study and some specialized EMG's, but he wanted to do it right then, and

>have Jeff admitted to the hospital. Jeff tried to explain that their

>hospital was out of network, and that he would want to do the testing

>somewhere closer to home (Houston is 7 hours away). The doctor said,

> " Well, I guess you're just going to leave AMA " !!!! and stormed out the

>door. Thank God for Dr. Wang, the intern who did Jeff's original workup in

>December. She did the preconsult and workup on Wednesday, and was able to

>get Jeff calmed down somewhat after his interview with this doc. THEN he

>gives Jeff a bill for $855 for the visit. Now realize that on our first

>visit, Jankovic spent at least 30 minutes talking to Jeff. This yahoo was

>in there less than 10! And they did the EXACT same workup. Dr. J's fee

>was $325. Jeff told the cashier that there was no way he was going to pay

>$855 for the abuse he got from that doctor. The doctor came out to the

>cashier's desk, scratched out $855, wrote in N/C and told Jeff (in front of

>everyone) that he never wanted to see him again!!

>

>Jeff got in from Houston Wednesday night and was COMPLETELY wiped out and

>demoralized. He could barely function yesterday and last night was so

>upset that he threw all his meds in the trash (he retrieved them a little

>later) He's not eating well, he's not sleeping well at all, so he can't

>get past this. It seems in the week since his doctor actually came out and

>told him he was dying, that he feels this futility in everything he does.

> And frankly, I don't know how to handle it. What do I tell him? A big

>part of me wants to scream at him and tell him to fight this with

>everything he's got, and the other small part that sees him suffer wants me

>to tell him it's OK, it's your body, if it's too much for you then just let

>go.....he looks to me for the validation of his actions, and I don't even

>know what those actions should be!!! He's a very proud man, does not

>accept help graciously. What's it going to be like for him when he can't

>drive, can't walk, can't make it to the bathroom on his own.

>

>He was better (spirit-wise) this morning. He went in to work for a little

>while, which is encouraging. He just loves this support group, even though

>he doesn't post. He reads the experiences everyone shares and it makes

>him feel so much better to know that there are people out there who really

>UNDERSTAND. Thank you all for that blessing in our lives!!

>

>I want to get you all a list of some of the tests the doctor wants to

>run....maybe you can shed some light on them. Will post them later.

>

>Thanks for your thoughts, M.

>

>

> Re: Jeff Maciejewski

>

>,

>Wondering how Jeff made out with his doctor's visit?.

>Jean & Chrissie

>

>If you do not wish to belong to shydrager, you may

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>

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Where the hell is this guy (doctor) at? I want to write a letter to his

medical association and enclose your email with it!. It's bad enough we

have this problem, but to be treated like this is completely uncalled for.

How many other of you would like to do the same? One short letter and send

this email along with it?

This really undoes my buttons! Tell Jeff to hang in there.

Ray

Re: Jeff Maciejewski

>

> ,

> Wondering how Jeff made out with his doctor's visit?.

> Jean & Chrissie

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

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Guest guest

I second the motion to file a formal complaint. Something is very wrong

here, I guarantee he did not learn to act that way in medical school.

The doctors first challenge from his peers is: DO NO HARM. By harm They mean

both mental and or physical Harm. Your doctor broke the first rule of

medicine. Do no harm.

God Bless,

Judy & Jim Stark.

Re: Jeff Maciejewski

> Dear and Jeff,

>

> I am so angry after reading of the awful treatment Jeff received from that

> doctor. I think you should post his name so that others can be forewarned

to

> not go to him. I also think you should file a complaint with the state

> medical board, the hospital, and any other governing organization. There

is

> absolutely no excuse for that type of behavior.

>

> It reminded me so much of the treatment my parents and I received when my

dad

> received his diagnosis of MSA. Had I known then what I know now I would

have

> filed a complaint - or been very direct with the doctor at the time of the

> visit. In short, he was rude and aggressive with my mom. His exam seemed

> thorough, but he yelled at my mom about how she would have to do this and

> that. It was very intimidating and obviously still gets my ire up.

>

> Jeff, hang in there.

>

> Thinking of you both,

> Cindy

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

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Hi all,

Jeff and are going through a tough time as they are still not at the

acceptance stage. Continuing a complaint at this time would cause a lot of

stress and since the doctor removed any charge, I don't feel it is worth it to

them. When I filed a complaint, they did not remove the charge, BUT they did

improve ther ER service and learned about MSA. Since that was my purpose, I

got what I wanted. A letter would probably not get them anything as he removed

the charge, the best they could hope for is an apology at this point (and I

doubt they will get one).

Remember that the doctor must account to the hospital for the tests and time,

so he knows he was wrong (yes he would not admit it then), but hopefully he

will learn from the experience. If he is really a good doctor and was having a

bad day, he will learn, if not he is a bad doctor and yes it would help to

write for documentation. If you do decide to write, limit the letter to a

brief expalanation of the incident; mention that you thought it was very

unprofessional; and decide what you want before writing the letter and mention

it in the first paragraph (like I feel I deserve an apology).

A letter to a professional group at this time is not warrented as you got some

redress in the removal of the charge. They will view that as an admission of

error and file it as over and done. The hospital is the better place as they

are still trying to cover their part of the loss of income, and will file it as

an active complaint - they lost some money.

I can understand the anger on the list over this, but let's keep it in

perspective. If you are going to complain, wait until you are calm and

rational, it does far more good. Also write your letter, wait a day and read

it again before sending it.

Take care, Bill Werre

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:

As a bystander, I really appreciate your approach to problems and succint

way of expressing it. Well done!

Message: 2

Date: Fri, 8 Mar 2002 15:08:50 -0500

Subject: RE: Jeff Maciejewski

Greetings and Jeff!

Jeff, I'm really writing this to you. You're wife just happens to be the

courier for this note. But it's just me to you, okay?

First, let's pretend you are at work and face this type of problem. It's

overwhelming. Where do you start? By trying to tackle the whole thing at

once? Nope. You find one corner of the puzzle that you can solve, work on

it, step back, and see if you can solve other pieces. So, let me suggest a

way to do just that.

First of all, it is EXTREMELY important that you resolve your sleep

problems. Severe sleep apnea (or other sleep problems) causes a severe

strain on your central nervous system. Believe me. I know. I've used a

CPAP / BiPAP unit for more than six years now. I would NOT be alive without

it. And my symptoms get MUCH worse if I sleep poorly.

Let's see if that is a corner of the whole puzzle we can solve. I hope that

if you can get your sleep problems under control, you will be better able to

work through the other problems.

How to get started on solving this? First of all, your PCP should be able

to refer you for a sleep study. Sometimes they are reluctant to do so,

because of the cost. If your PCP heads down that path, be insistent, and

note that it is now impacting your ability to drive, and worry that it will

result in a serious accident, even death. If you PCP doesn't listen to

that, then change PCPs. If they are not worried about the resulting

litigation they should not be in the practice of medicine - or anything

else, for that matter.

How can getting the sleep test help? It's quite likely from what you

describe you are suffering SEVERE sleep deprivation. This is WAY beyond

just missing a little bit of sleep. Remember, there is a reason that sleep

deprivation is used as a form of torture throughout the world. It is

effective. It is simple. And it will destroy the person being tortured.

All without leaving a mark on that person.

Here are a couple of site that discuss sleep apnea:

http://health.yahoo.com/health/dc/000811/0.html

http://www.cpapman.com/disorder.htm

Please get on this immediately! It is that important to your health and to

your family.

Regards,

=jbf=

B. Fisher

Sennewald Charlottesville, Virginia

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:

As a bystander, I really appreciate your approach to problems and succint

way of expressing it. Well done!

Message: 2

Date: Fri, 8 Mar 2002 15:08:50 -0500

Subject: RE: Jeff Maciejewski

Greetings and Jeff!

Jeff, I'm really writing this to you. You're wife just happens to be the

courier for this note. But it's just me to you, okay?

First, let's pretend you are at work and face this type of problem. It's

overwhelming. Where do you start? By trying to tackle the whole thing at

once? Nope. You find one corner of the puzzle that you can solve, work on

it, step back, and see if you can solve other pieces. So, let me suggest a

way to do just that.

First of all, it is EXTREMELY important that you resolve your sleep

problems. Severe sleep apnea (or other sleep problems) causes a severe

strain on your central nervous system. Believe me. I know. I've used a

CPAP / BiPAP unit for more than six years now. I would NOT be alive without

it. And my symptoms get MUCH worse if I sleep poorly.

Let's see if that is a corner of the whole puzzle we can solve. I hope that

if you can get your sleep problems under control, you will be better able to

work through the other problems.

How to get started on solving this? First of all, your PCP should be able

to refer you for a sleep study. Sometimes they are reluctant to do so,

because of the cost. If your PCP heads down that path, be insistent, and

note that it is now impacting your ability to drive, and worry that it will

result in a serious accident, even death. If you PCP doesn't listen to

that, then change PCPs. If they are not worried about the resulting

litigation they should not be in the practice of medicine - or anything

else, for that matter.

How can getting the sleep test help? It's quite likely from what you

describe you are suffering SEVERE sleep deprivation. This is WAY beyond

just missing a little bit of sleep. Remember, there is a reason that sleep

deprivation is used as a form of torture throughout the world. It is

effective. It is simple. And it will destroy the person being tortured.

All without leaving a mark on that person.

Here are a couple of site that discuss sleep apnea:

http://health.yahoo.com/health/dc/000811/0.html

http://www.cpapman.com/disorder.htm

Please get on this immediately! It is that important to your health and to

your family.

Regards,

=jbf=

B. Fisher

Sennewald Charlottesville, Virginia

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:

As a bystander, I really appreciate your approach to problems and succint

way of expressing it. Well done!

Message: 2

Date: Fri, 8 Mar 2002 15:08:50 -0500

Subject: RE: Jeff Maciejewski

Greetings and Jeff!

Jeff, I'm really writing this to you. You're wife just happens to be the

courier for this note. But it's just me to you, okay?

First, let's pretend you are at work and face this type of problem. It's

overwhelming. Where do you start? By trying to tackle the whole thing at

once? Nope. You find one corner of the puzzle that you can solve, work on

it, step back, and see if you can solve other pieces. So, let me suggest a

way to do just that.

First of all, it is EXTREMELY important that you resolve your sleep

problems. Severe sleep apnea (or other sleep problems) causes a severe

strain on your central nervous system. Believe me. I know. I've used a

CPAP / BiPAP unit for more than six years now. I would NOT be alive without

it. And my symptoms get MUCH worse if I sleep poorly.

Let's see if that is a corner of the whole puzzle we can solve. I hope that

if you can get your sleep problems under control, you will be better able to

work through the other problems.

How to get started on solving this? First of all, your PCP should be able

to refer you for a sleep study. Sometimes they are reluctant to do so,

because of the cost. If your PCP heads down that path, be insistent, and

note that it is now impacting your ability to drive, and worry that it will

result in a serious accident, even death. If you PCP doesn't listen to

that, then change PCPs. If they are not worried about the resulting

litigation they should not be in the practice of medicine - or anything

else, for that matter.

How can getting the sleep test help? It's quite likely from what you

describe you are suffering SEVERE sleep deprivation. This is WAY beyond

just missing a little bit of sleep. Remember, there is a reason that sleep

deprivation is used as a form of torture throughout the world. It is

effective. It is simple. And it will destroy the person being tortured.

All without leaving a mark on that person.

Here are a couple of site that discuss sleep apnea:

http://health.yahoo.com/health/dc/000811/0.html

http://www.cpapman.com/disorder.htm

Please get on this immediately! It is that important to your health and to

your family.

Regards,

=jbf=

B. Fisher

Sennewald Charlottesville, Virginia

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,

You hang in there, be as supportive as you can be. You are both in my

prayers. Concerning the 'Doctor " , and I use this word loosely his behavior

was totally uncalled for and unethical in his profession. I agree with what

others have said that you should not let this pass without reporting him.

*****If Dr. Baser is reading this, please respond as a doctor who

cares about her patient. Please give some advise as to the proper

procedure to follow.*****

, Dr. Baser is 's doctor and she is wonderful.....

Tell Jeff that he didn't deserve the treatment he received. He deserves so

much MORE from a DOCTOR.

Joan

Re: Jeff Maciejewski

>

> ,

> Wondering how Jeff made out with his doctor's visit?.

> Jean & Chrissie

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

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Greetings !

Thanks for the kind words. But I would hope I could do that, since I solve

lots of very difficult, time and business critical computer problems as part

of my job. Either I do this correctly, or companies we support loose lots

of money. Fortunately, solving problems is something I love to do. I

discovered early on with this disorder, that tackling one thing at a time is

essential. No magic. Just consistent use of that approach.

Regards,

=jbf=

B. Fisher

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Hi :

I can understand your frustration with Jeff's Dr. I went thru the same

sort of thing with my sister (). A neuro visited her in the

hospital & practically told her he thought he could cure her, believe it

or not. The first visit to his office, he was wonderful and prescribed

some meds. They really didn't do much. The last time we went, when he

realized he wasn't really " curing her " , he came in to see us with a

resident, practically ignored us, treated terribly. We just

ignored him & of course never returned.

During 's MSA, in & out of hospitals, rehabs, etc. I only had to

write 1 letter. And, after writing the letter, the problem was

corrected. I never hesitated to mention to anyone if I felt they were

not taking care of her properly.

In my current job, we test many medical profs., including med students &

Drs. They do have to take several tests, the final one for their

license. I'm very impressed with alot of the younger upcoming Drs. I

don't know if in the future they will change, but at this point in their

life, they are eager for knowledge & seem like they would have a good

bedside manner. There have been a few that have been extremely arrogant

and just plain obnoxious, but not too many. Of course, we are testing

them, so I guess they figure they had better be nice :).

My PCP is quite funny. In conversation, she has mentioned the names of

Drs. in our area that she knows or went to med school with that are as

she says, " scoping/testing for dollars " and to keep away from them. So,

as with all professions, there are always a few duds.

I think MSA must be a very frustrating disease to some Drs. as well as to

all of us. They are trained to heal and help, but with today's HMO's,

medicare, etc. their hands are tied. I think they just plain have some

bad days and unfortunately make judgment errors.

Carole Barber

________________________________________________________________

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