Re: For Gillian, Debra and all on topic of doc visits..

[Guest guest]

Some people play baseball or football (or pick your favorite

occupation) for 20 or 30 years, and still stink!

Take care,

RH

> > > > Hi again Adam..

> > > >

> > > > I hope you are feeling better today and starting to feel

ready

> to

> > > > fight back..> I have been thinking deeply about your problems

> > with

> > > the gastro. and > the mito.

> > > >

> > > > This is now where i risk getting 'yelled' at by everyone but

> here

> > > > goes anyway....I am obviously not aware if you have any

> visible

> > > > disability but when I went to the gastro. I answered his

> question

> > > > TRUTHFULLY but NOT COMPLETELY...why are you in a

> > wheelchair..answer

> > > > thoracic myleopathy..no further comment by myself as advised

> by

> > my

> > > > GP and metabolic Mito. Doc. I believe the expression is '

> don't

> > > let

> > > > them look for the Zebras in Central Park' ( or elephants on

> > Rotten

> > > > Row LOL) make them look at what you are there for....

> > > >

> > > > As a result of this advice to keep quiet I had Endoscopy

which

> > > > showed problems..parietal antibody attack and he confirmed PA

> > > > (autoimmune) colonoscopy neg. and possible IgG coeliac..my

> follow

> > > up

> > > > appt was VERY positive..I was asked where my family come from

> > > > originally as many people from UK, Scandanavia and US (all

the

> MS

> > > > world band) are found with thyroid to have LOW stomach acid

> and

> > > > can't digest food this doc really knew his stuff and

confirmed

> > the

> > > > myleopathy was B12 problem ...further tests he wanted to do

> were

> > > > gastric emptying and something I forget what to measure the

> acid

> > > > produced..... a trial of a very small dose of Pred. bought a

> heck

> > > of

> > > > a lot of relief to so much it was incredible..

> > > >

> > > > My Gp and metabolic doc were delighted... I then at my next

> appt.

> > > > made the fatal mistake of saying I had a biopsy and

> mito.cyto.

> > He

> > > > discharged me on the spot..think what I am trying to say in a

> > long

> > > > winded way is do you HAVE to tell all the other Docs you have

> > > > Mito. ?????? Just try what I do if you can ..have a GP and

> > > metabolic

> > > > Doc who knows..why tell the others ? Let them look at you as

a

> > > > person without the mito.cyto. red herring.

> > > >

> > > > I certainly think it is worth following up what your

> alternative

> > > > practioner mentioned and getting loads of rest and trying to

> > enjoy

> > > > yourself..laughter is the best medicine..after thumping rude

> > > > docs..LOL

> > > >

> > > > Gillian

[Guest guest]

Thanks, Laurie, I can just see Gillian saying " Those brash Americans,

who do they think they are questioning doctors? " LOL

I am getting my Ph.D., so I'll be a doctor in a few months and give

the M.D.'s a *real* piece of my mind

I may end up teaching in a medical school (lots of Ph.D.'s do, you

don't need an M.D. to teach in medical school). In addition to

regular courses, I'll have to teach " Patient-assisted medicine " about

buying in patient's help for chronic illnesses. What do you think?

I am impressed that many on this list probably don't have a

scientific background and you've learned so much about mitochondrial

disease and can " talk the talk " very well.

Take care,

RH

> >>> Hi again Adam..

> >>>

> >>> I hope you are feeling better today and starting to feel ready

to

> >>> fight back..> I have been thinking deeply about your problems

> > with

> >> the gastro. and > the mito.

> >>>

> >>> This is now where i risk getting 'yelled' at by everyone but

here

> >>> goes anyway....I am obviously not aware if you have any visible

> >>> disability but when I went to the gastro. I answered his

question

> >>> TRUTHFULLY but NOT COMPLETELY...why are you in a

> > wheelchair..answer

> >>> thoracic myleopathy..no further comment by myself as advised by

> > my

> >>> GP and metabolic Mito. Doc. I believe the expression is ' don't

> >> let

> >>> them look for the Zebras in Central Park' ( or elephants on

> > Rotten

> >>> Row LOL) make them look at what you are there for....

> >>>

> >>> As a result of this advice to keep quiet I had Endoscopy which

> >>> showed problems..parietal antibody attack and he confirmed PA

> >>> (autoimmune) colonoscopy neg. and possible IgG coeliac..my

follow

> >> up

> >>> appt was VERY positive..I was asked where my family come from

> >>> originally as many people from UK, Scandanavia and US (all the

MS

> >>> world band) are found with thyroid to have LOW stomach acid and

> >>> can't digest food this doc really knew his stuff and confirmed

> > the

> >>> myleopathy was B12 problem ...further tests he wanted to do

were

> >>> gastric emptying and something I forget what to measure the acid

> >>> produced..... a trial of a very small dose of Pred. bought a

heck

> >> of

> >>> a lot of relief to so much it was incredible..

> >>>

> >>> My Gp and metabolic doc were delighted... I then at my next

appt.

> >>> made the fatal mistake of saying I had a biopsy and mito.cyto.

> > He

> >>> discharged me on the spot..think what I am trying to say in a

> > long

> >>> winded way is do you HAVE to tell all the other Docs you have

> >>> Mito. ?????? Just try what I do if you can ..have a GP and

> >> metabolic

> >>> Doc who knows..why tell the others ? Let them look at you as a

> >>> person without the mito.cyto. red herring.

> >>>

> >>> I certainly think it is worth following up what your alternative

> >>> practioner mentioned and getting loads of rest and trying to

> > enjoy

> >>> yourself..laughter is the best medicine..after thumping rude

> >>> docs..LOL

> >>>

> >>> Gillian

> >

> >

> >

> >

> >

> > Medical advice, information, opinions, data and statements

contained herein

> > are not necessarily those of the list moderators. The author of

this e mail is

> > entirely responsible for its content. List members are reminded

of their

> > responsibility to evaluate the content of the postings and

consult with their

> > physicians regarding changes in their own treatment.

> >

> > Personal attacks are not permitted on the list and anyone who

sends one is

> > automatically moderated or removed depending on the severity of

the attack.

> >

> >

> >

> >

[Guest guest]

Yes, and get in a few doctors who have been patients. Boy, does

*that* open their eyes. My family doctor is not afraid to share her

personal experiences with her patients, and it makes her a better

doctor.

Sometimes I think pediatricians and pediatric specialists spend more

time talking to parents and explaining things to them, like care and

things to look for, than regular doctors spend with their patients.

Take care,

RH

> >>>>> Hi again Adam..

> >>>>>

> >>>>> I hope you are feeling better today and starting to feel ready

> > to

> >>>>> fight back..> I have been thinking deeply about your problems

> >>> with

> >>>> the gastro. and > the mito.

> >>>>>

> >>>>> This is now where i risk getting 'yelled' at by everyone but

> > here

> >>>>> goes anyway....I am obviously not aware if you have any

visible

> >>>>> disability but when I went to the gastro. I answered his

> > question

> >>>>> TRUTHFULLY but NOT COMPLETELY...why are you in a

> >>> wheelchair..answer

> >>>>> thoracic myleopathy..no further comment by myself as advised

by

> >>> my

> >>>>> GP and metabolic Mito. Doc. I believe the expression is '

don't

> >>>> let

> >>>>> them look for the Zebras in Central Park' ( or elephants on

> >>> Rotten

> >>>>> Row LOL) make them look at what you are there for....

> >>>>>

> >>>>> As a result of this advice to keep quiet I had Endoscopy which

> >>>>> showed problems..parietal antibody attack and he confirmed PA

> >>>>> (autoimmune) colonoscopy neg. and possible IgG coeliac..my

> > follow

> >>>> up

> >>>>> appt was VERY positive..I was asked where my family come from

> >>>>> originally as many people from UK, Scandanavia and US (all the

> > MS

> >>>>> world band) are found with thyroid to have LOW stomach acid

and

> >>>>> can't digest food this doc really knew his stuff and confirmed

> >>> the

> >>>>> myleopathy was B12 problem ...further tests he wanted to do

> > were

> >>>>> gastric emptying and something I forget what to measure the

acid

> >>>>> produced..... a trial of a very small dose of Pred. bought a

> > heck

> >>>> of

> >>>>> a lot of relief to so much it was incredible..

> >>>>>

> >>>>> My Gp and metabolic doc were delighted... I then at my next

> > appt.

> >>>>> made the fatal mistake of saying I had a biopsy and mito.cyto.

> >>> He

> >>>>> discharged me on the spot..think what I am trying to say in a

> >>> long

> >>>>> winded way is do you HAVE to tell all the other Docs you have

> >>>>> Mito. ?????? Just try what I do if you can ..have a GP and

> >>>> metabolic

> >>>>> Doc who knows..why tell the others ? Let them look at you as a

> >>>>> person without the mito.cyto. red herring.

> >>>>>

> >>>>> I certainly think it is worth following up what your

alternative

> >>>>> practioner mentioned and getting loads of rest and trying to

> >>> enjoy

> >>>>> yourself..laughter is the best medicine..after thumping rude

> >>>>> docs..LOL

> >>>>>

> >>>>> Gillian

> >>>

> >>>

> >>>

> >>>

> >>>

> >>> Medical advice, information, opinions, data and statements

> > contained herein

> >>> are not necessarily those of the list moderators. The author of

> > this e mail is

> >>> entirely responsible for its content. List members are reminded

> > of their

> >>> responsibility to evaluate the content of the postings and

> > consult with their

> >>> physicians regarding changes in their own treatment.

> >>>

> >>> Personal attacks are not permitted on the list and anyone who

> > sends one is

> >>> automatically moderated or removed depending on the severity of

> > the attack.

> >>>

> >>>

> >>>

> >>>

[Guest guest]

RH

I think it is important for us to teach the doctors in any way we can. That

would be a neat class to teach. I can see you bringing in folks with other

kinds of chronic illnesses to talk to the class.

laurie

>

> Reply-To:

> Date: Mon, 11 Oct 2004 19:15:25 -0000

> To:

> Subject: Re: For Gillian, Debra and all on topic of doc visits..

>

>

> Thanks, Laurie, I can just see Gillian saying " Those brash Americans,

> who do they think they are questioning doctors? " LOL

>

> I am getting my Ph.D., so I'll be a doctor in a few months and give

> the M.D.'s a *real* piece of my mind

>

> I may end up teaching in a medical school (lots of Ph.D.'s do, you

> don't need an M.D. to teach in medical school). In addition to

> regular courses, I'll have to teach " Patient-assisted medicine " about

> buying in patient's help for chronic illnesses. What do you think?

>

> I am impressed that many on this list probably don't have a

> scientific background and you've learned so much about mitochondrial

> disease and can " talk the talk " very well.

>

> Take care,

> RH

>

>

>

>>>>> Hi again Adam..

>>>>>

>>>>> I hope you are feeling better today and starting to feel ready

> to

>>>>> fight back..> I have been thinking deeply about your problems

>>> with

>>>> the gastro. and > the mito.

>>>>>

>>>>> This is now where i risk getting 'yelled' at by everyone but

> here

>>>>> goes anyway....I am obviously not aware if you have any visible

>>>>> disability but when I went to the gastro. I answered his

> question

>>>>> TRUTHFULLY but NOT COMPLETELY...why are you in a

>>> wheelchair..answer

>>>>> thoracic myleopathy..no further comment by myself as advised by

>>> my

>>>>> GP and metabolic Mito. Doc. I believe the expression is ' don't

>>>> let

>>>>> them look for the Zebras in Central Park' ( or elephants on

>>> Rotten

>>>>> Row LOL) make them look at what you are there for....

>>>>>

>>>>> As a result of this advice to keep quiet I had Endoscopy which

>>>>> showed problems..parietal antibody attack and he confirmed PA

>>>>> (autoimmune) colonoscopy neg. and possible IgG coeliac..my

> follow

>>>> up

>>>>> appt was VERY positive..I was asked where my family come from

>>>>> originally as many people from UK, Scandanavia and US (all the

> MS

>>>>> world band) are found with thyroid to have LOW stomach acid and

>>>>> can't digest food this doc really knew his stuff and confirmed

>>> the

>>>>> myleopathy was B12 problem ...further tests he wanted to do

> were

>>>>> gastric emptying and something I forget what to measure the acid

>>>>> produced..... a trial of a very small dose of Pred. bought a

> heck

>>>> of

>>>>> a lot of relief to so much it was incredible..

>>>>>

>>>>> My Gp and metabolic doc were delighted... I then at my next

> appt.

>>>>> made the fatal mistake of saying I had a biopsy and mito.cyto.

>>> He

>>>>> discharged me on the spot..think what I am trying to say in a

>>> long

>>>>> winded way is do you HAVE to tell all the other Docs you have

>>>>> Mito. ?????? Just try what I do if you can ..have a GP and

>>>> metabolic

>>>>> Doc who knows..why tell the others ? Let them look at you as a

>>>>> person without the mito.cyto. red herring.

>>>>>

>>>>> I certainly think it is worth following up what your alternative

>>>>> practioner mentioned and getting loads of rest and trying to

>>> enjoy

>>>>> yourself..laughter is the best medicine..after thumping rude

>>>>> docs..LOL

>>>>>

>>>>> Gillian

>>>

>>>

>>>

>>>

>>>

>>> Medical advice, information, opinions, data and statements

> contained herein

>>> are not necessarily those of the list moderators. The author of

> this e mail is

>>> entirely responsible for its content. List members are reminded

> of their

>>> responsibility to evaluate the content of the postings and

> consult with their

>>> physicians regarding changes in their own treatment.

>>>

>>> Personal attacks are not permitted on the list and anyone who

> sends one is

>>> automatically moderated or removed depending on the severity of

> the attack.

>>>

>>>

>>>

>>>

[Guest guest]

Hey no I don't say thet at all ....far from it ..at times I

don't think you ask them enough of the right questions..LOL

Very few neuro's (if any) understand the heart/kidney/anaemia cycle

or thyroid/adrenal correlation and certainly are incapable of

reading an EMG which shows a thoracic myleopathy..it took the folks

on braintalk to translate my B12/folate readings for me to be able

to show the neuro. the error of his ways..-I did not go along with

his " oh it's part of the mito. " yes it might be caused by the mito.

(its autoimmune BTW) but I do expect these idiots to treat with the

appropriate pharmaceutical medication...ie. B12 jabs.

Neuro's are not renowned for their ability to actually read 'bloods'

therefore it is up to the patient to do that... ..I have

attended the best medical school possible ..it is called the school

of life.

Gillian

-- In , " ohgminion " wrote:

>

> Thanks, Laurie, I can just see Gillian saying " Those brash

Americans,

> who do they think they are questioning doctors? " LOL

>

> I am getting my Ph.D., so I'll be a doctor in a few months and

give

> the M.D.'s a *real* piece of my mind

>

> I may end up teaching in a medical school (lots of Ph.D.'s do, you

> don't need an M.D. to teach in medical school). In addition to

> regular courses, I'll have to teach " Patient-assisted medicine "

about

> buying in patient's help for chronic illnesses. What do you think?

>

> I am impressed that many on this list probably don't have a

> scientific background and you've learned so much about

mitochondrial

> disease and can " talk the talk " very well.

>

> Take care,

> RH

>

>

>

> > >>> Hi again Adam..

> > >>>

> > >>> I hope you are feeling better today and starting to feel

ready

> to

> > >>> fight back..> I have been thinking deeply about your problems

> > > with

> > >> the gastro. and > the mito.

> > >>>

> > >>> This is now where i risk getting 'yelled' at by everyone but

> here

> > >>> goes anyway....I am obviously not aware if you have any

visible

> > >>> disability but when I went to the gastro. I answered his

> question

> > >>> TRUTHFULLY but NOT COMPLETELY...why are you in a

> > > wheelchair..answer

> > >>> thoracic myleopathy..no further comment by myself as advised

by

> > > my

> > >>> GP and metabolic Mito. Doc. I believe the expression is '

don't

> > >> let

> > >>> them look for the Zebras in Central Park' ( or elephants on

> > > Rotten

> > >>> Row LOL) make them look at what you are there for....

> > >>>

> > >>> As a result of this advice to keep quiet I had Endoscopy

which

> > >>> showed problems..parietal antibody attack and he confirmed PA

> > >>> (autoimmune) colonoscopy neg. and possible IgG coeliac..my

> follow

> > >> up

> > >>> appt was VERY positive..I was asked where my family come from

> > >>> originally as many people from UK, Scandanavia and US (all

the

> MS

> > >>> world band) are found with thyroid to have LOW stomach acid

and

> > >>> can't digest food this doc really knew his stuff and

confirmed

> > > the

> > >>> myleopathy was B12 problem ...further tests he wanted to do

> were

> > >>> gastric emptying and something I forget what to measure the

acid

> > >>> produced..... a trial of a very small dose of Pred. bought a

> heck

> > >> of

> > >>> a lot of relief to so much it was incredible..

> > >>>

> > >>> My Gp and metabolic doc were delighted... I then at my next

> appt.

> > >>> made the fatal mistake of saying I had a biopsy and

mito.cyto.

> > > He

> > >>> discharged me on the spot..think what I am trying to say in a

> > > long

> > >>> winded way is do you HAVE to tell all the other Docs you have

> > >>> Mito. ?????? Just try what I do if you can ..have a GP and

> > >> metabolic

> > >>> Doc who knows..why tell the others ? Let them look at you as

a

> > >>> person without the mito.cyto. red herring.

> > >>>

> > >>> I certainly think it is worth following up what your

alternative

> > >>> practioner mentioned and getting loads of rest and trying to

> > > enjoy

> > >>> yourself..laughter is the best medicine..after thumping rude

> > >>> docs..LOL

> > >>>

> > >>> Gillian

> > >

> > >

> > >

> > >

> > >

> > > Medical advice, information, opinions, data and statements

> contained herein

> > > are not necessarily those of the list moderators. The author

of

> this e mail is

> > > entirely responsible for its content. List members are

reminded

> of their

> > > responsibility to evaluate the content of the postings and

> consult with their

> > > physicians regarding changes in their own treatment.

> > >

> > > Personal attacks are not permitted on the list and anyone who

> sends one is

> > > automatically moderated or removed depending on the severity

of

> the attack.

> > >

> > >

> > >

> > >

[Guest guest]

> I have attended the best medical school possible ..it is called

the school

> of life.

>

> Gillian

You go girl!

Here's my take: Patients are experts in the experience of illness.

Some things can be learned only by living first-hand with a disease.

Doctors who genuinely want to expand their understanding of a given

disease will do well to respect the unique contributions that the

patient can offer, regardless of how much medical knowledge the

patient has. Too many doctors dismiss patient observations as

unreliable and are generally paternalistic and condescending about

any patient's ability to sort through symptoms and accurately

discern cause and effect. After 20 years of contact with patients

all over the world, I have developed a tremendous respect for The

Patient. We aren't infallible, but neither is the doctor.

Ideally, a good doctor-patient relationship is seen by both as a

meeting of experts. Each acknowledges the other's areas of expertise

and contributes what he/she knows best. That said, I wish more

doctors were like neurologist Oliver Sacks, who acknowledges that

seeing patients only in a clinical setting, as opposed to real life

situations, severely limits the doctor's understanding of the

disease. He also spurns the current scientific practice of reporting

anonymous case histories in sterile, scientific language with no

reference to the person, the life being lived and how the disease

affects that life. Thus his wonderful books that integrate science

and life-as-it-is-lived in the context of disease.

Barbara