Re: Re: Educating the doctor?

[Guest guest]

It always makes me sad as well as angry when doctors don't want to listen to what the patient has to say. We went through some of that back in the mid 90's as my wife's condition worsened the doctor did not want to become proactive. Finally a brain biopsy was ordered for Nov. 2004 and we were sent to a doctor at NYU who proceeded to tell me he knew our doctor & would speak with him, I thought yeah ok when he has time. he immediately picked up the phone and called. he became extremely proactive. We kept him as her neurologist until we moved and it became too far to travel into the city. Keep pusing them to help you. In our case each time we were stalled we lost a bit more which we will never get back.Take care. Subject: Re: Educating the doctor?To: Neurosarcoidosis Date: Thursday, July 30, 2009, 7:47 AM

He is attached to the University hospital, that's the sad bit! My GP

is refusing to speak to me about it at all, which is rather odd, he's

normally great with everything.. . he just shuts down the second I

mention the s word.

Ah well. Will harrass the doc until he does something useful.

Thanks, Matt.

>

> From: third_usher third_usher@ ...

> Subject: Educating the doctor?

> To: Neurosarcoidosis@ yahoogroups. com

> Date: Wednesday, July 29, 2009, 7:50 AM

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> I've tried searching for this, but either get too many results, or not

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> I see that you all recommend being very proactive re:healthcare. ..

I'm

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> wondering if anyone has any tips on motivating the doctor? Mine is

very

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> happy it is in my lungs, lymph nodes, and heart, and does not seem to

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> understand the concept that a multi-organ disorder can affect more

than

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> that little group. Given some of the stuff I've got going on, I'm a

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> little concerned about the spread of the sarcoidosis.

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> Any tips at all on how to manage my doctor into understanding this,

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> aside from referring him to the Marshall Protocol, which he has

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> dismissed?

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[Guest guest]

When I first noticed something was wrong it was because my legs were twitching and jumping all the time. I went to my primary phy. and told her I thought I had restless leg symptoms going on. She, instead of checking, told me I watched too much TV. This went on for a couple months until I got the Bells Palsy. Then she called a neuro and we found it was a beginning of the N Sarc. She doesn't take what I say for granted anymore. She also continues to make statements like Please don't sue me. She is still my PCP and together we are handling this well. Along with a neurologist and a rheumatologist. WE are a pretty good team.

EVERYONE make them listen to you and act.

Jackie

Educating the doctor?> To: Neurosarcoidosis@ yahoogroups. com> Date: Wednesday, July 29, 2009, 7:50 AM>>>>>>>>>>>>>>> I've tried searching for this, but either get too many results, or not>> enough!>>>> I see that you all recommend being very proactive re:healthcare. ..I'm>> wondering if anyone has any tips on motivating the doctor? Mine isvery>> happy it is in my lungs, lymph nodes, and heart, and does not seem to>> understand the concept that a multi-organ disorder can affect morethan>> that little group. Given some of the stuff I've got going on, I'm a>> little concerned about the spread of the sarcoidosis.>>>> Any tips at all on how to manage my doctor into understanding this,>> aside from referring him to the Marshall Protocol, which he hasalready>> dismissed?>

[Guest guest]

You need to print up what you've been reading, like I said check out the archives and get the information that you need, take it to your doctor, and tell him just how you feel.I fought and fought until I finally got treatment, the first time was the hardest, so don't

take this seating down, make an appt.  print out the info and take it in, if he doesn't listenkeep looking till you find someone to listen, however, I think if you show him how seriousSarcoid really is, he will listen, I will be thinking positive thoughts for you! 

Marl a

 

Hi Marla,

No, not on any meds or anthing at all. Treatment is a lung function test

every 3 months. He agrees with Google that sarcoidosis is not a big

deal... from what I can see in the research, it is quite a big deal, as

you say. Right now, I feel like I'd rather deal with med side effects

than continue the way I've been feeling lately.

Thank you.

>

> >

> >

> >

> > I've tried searching for this, but either get too many results, or

not

> > enough!

> >

> > I see that you all recommend being very proactive re:healthcare...

I'm

> > wondering if anyone has any tips on motivating the doctor? Mine is

very

> > happy it is in my lungs, lymph nodes, and heart, and does not seem

to

> > understand the concept that a multi-organ disorder can affect more

than

> > that little group. Given some of the stuff I've got going on, I'm a

> > little concerned about the spread of the sarcoidosis.

> >

> > Any tips at all on how to manage my doctor into understanding this,

> > aside from referring him to the Marshall Protocol, which he has

already

> > dismissed?

> >

> >

> >

>

[Guest guest]

I totally agree with . It has always amazed me that they think they totally know more about someone's body and what it is doing, than the person who lives in it 24/7. I'm not a doctor, but I have 53 yrs of experience dealing with this body, I sort of believe that gives me a bit of a clue when something is going wrong. Your primary probably doesn't want to talk about sarc, because he knows nothing or very little about it. I have had ER professional's look at me and go "you have what?"

Keep fighting, we have your back///connie

From: third_usher <third_usher@ yahoo.com>Subject: Re: Educating the doctor?To: Neurosarcoidosis@ yahoogroups. comDate: Thursday, July 30, 2009, 7:47 AM

He is attached to the University hospital, that's the sad bit! My GPis refusing to speak to me about it at all, which is rather odd, he'snormally great with everything.. . he just shuts down the second Imention the s word.Ah well. Will harrass the doc until he does something useful.Thanks, Matt. >> From: third_usher third_usher@ ...> Subject: Educating

the doctor?> To: Neurosarcoidosis@ yahoogroups. com> Date: Wednesday, July 29, 2009, 7:50 AM>>>>>>>>>>>>>>> I've tried searching for this, but either get too many results, or not>> enough!>>>> I see that you all recommend being very proactive re:healthcare. ..I'm>> wondering if anyone has any tips on motivating the doctor? Mine isvery>> happy it is in my lungs, lymph nodes, and heart, and does not seem to>> understand the concept that a multi-organ disorder can affect morethan>> that little group. Given some of the stuff I've got going on, I'm a>> little concerned about the spread of the sarcoidosis.>>>> Any tips at all on how to manage my doctor into understanding

this,>> aside from referring him to the Marshall Protocol, which he hasalready>> dismissed?>

[Guest guest]

Absolutely. had a fall back in May and we had to go to trauma unit. I found myself explaining to the ER staff that she did not have a seizure that caused the fall it was the neurosarcoidosis. The doctor actually asked me how long I had been in denial. Managed to be civil and let him know that if it had been a seizure along with the head wound she received there would have been a much larger puddle of blood on the floor & she would not have been able to head to the neighbor for assistance & the outcome may have been a lot worse. This all happened while I was at work & had to head to the hospital. The doctor just looked at me and said OH.

From: third_usher <third_usher@ yahoo.com>Subject: Re: Educating the doctor?To: Neurosarcoidosis@ yahoogroups. comDate: Thursday, July 30, 2009, 7:47 AM

He is attached to the University hospital, that's the sad bit! My GPis refusing to speak to me about it at all, which is rather odd, he'snormally great with everything.. . he just shuts down the second Imention the s word.Ah well. Will harrass the doc until he does something useful.Thanks, Matt. >> From: third_usher third_usher@ ...> Subject: Educating

the doctor?> To: Neurosarcoidosis@ yahoogroups. com> Date: Wednesday, July 29, 2009, 7:50 AM>>>>>>>>>>>>>>> I've tried searching for this, but either get too many results, or not>> enough!>>>> I see that you all recommend being very proactive re:healthcare. ..I'm>> wondering if anyone has any tips on motivating the doctor? Mine isvery>> happy it is in my lungs, lymph nodes, and heart, and does not seem to>> understand the concept that a multi-organ disorder can affect morethan>> that little group. Given some of the stuff I've got going on, I'm a>> little concerned about the spread of the sarcoidosis.>>>> Any tips at all on how to manage my doctor into understanding

this,>> aside from referring him to the Marshall Protocol, which he hasalready>> dismissed?>

[Guest guest]

Hey, that's what friends and family do. Please take care, you will be in mine and my families prayers. connie

Subject: Re: Educating the doctor?To: Neurosarcoidosis Date: Friday, July 31, 2009, 1:55 PM

It quite surprises me, because even when he doesn't know anything, he isalways very fast to whip out his handbook of conditions and his lilttleblack book of useful contacts and find someone who does. His silence isworrying me a little. Ah well.Thanks for having my back Connie, that's one of the most reassuringthings I have heard in a long time. :-)> >> > From: third_usher third_usher@ ...> > Subject: Educating the doctor?> > To: Neurosarcoidosis@ yahoogroups. com> > Date: Wednesday, July 29, 2009, 7:50 AM> >> >> >> >> >> >> >> >> >> >> >> >> >> >> > I've tried searching for this, but either get too many results, ornot> >> > enough!> >> >> >> > I see that you all recommend being very proactive re:healthcare. ..> I'm> >> > wondering if anyone has any tips on motivating the doctor? Mine is> very> >> > happy it is in my lungs, lymph nodes, and heart, and does not seemto> >> > understand the concept that

a multi-organ disorder can affect more> than> >> > that little group. Given some of the stuff I've got going on, I'm a> >> > little concerned about the spread of the sarcoidosis.> >> >> >> > Any tips at all on how to manage my doctor into understanding this,> >> > aside from referring him to the Marshall Protocol, which he has> already> >> > dismissed?> >>