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

[Guest guest]

Hi Gillian and all on topic of Doc visits,

Not sure I am following the suggestions about how to handle doc

visits. If mito is part of your record, I would think that would be

the first thing they pick up when they review it.

I think Gillian you are saying that when you go to a specialist, just

address your current symptoms and don't bring the mito into it?

I can see the point you were trying to make, Debra, about how a

doctor might view mito. I have found that my primary care doctors

have become of no use to me at all as they immediately refer me to my

mito specialist on the smallest of problems. So now I just call him

and skip the primary care doc. Which isn't so good for the mito

specialist, although it is for me. :-) Although he is overworked, he

always answers a page and always has something helpful and supportive

to say. So I try not to abuse the pager.

But getting back to your view of the doctor's response to mito,

Debra. Boy I am really getting confused here...lol. First of all,

from my experience, I run into more docs that haven't a clue of what

mito is. They actually may never have heard of it, or maybe just the

name is all they remember and I feel as I talk to them that I know

more about it then they do. [Although I hardly know anything]

What I think you are saying is that there are docs that know enough

about mito for it to scare them. They also may feel that it is a

hopeless situation because it is genetic and can't be actually

treated, but only managed. And that the management is very time

intensive and complicated and they just would rather have an easier

patient. I can see their point I suppose, but where does that leave

all the poor mito patients? And it just goes to confirm what I think

about many doctors, is that it is just a job to them for the most

part. Not too many doctors actually have a calling and a lot of

compassion for sick people. I have met a few along the way, but few

and far between. Still, I suppose that mito IS scary and difficult

to manage, so I guess I can understand someone not wanting to start

down that road. Actually would we be going down that road, if we had

a choice..lol.

Gillian when I go to a doc's office, I don't have any noticeable

disability. I do go in a wheelchair although I can walk, it will use

all my energy and maybe put me over the limit if I do, so I always

use a wheelchair whenever any significant walking is involved. Some

doctors have a hard time with that. You can tell even if they don't

say so. They can see that you CAN walk and they don't understand.

Other doctors ask about it. I always say I am just saving my energy.

Other docs write in their notes that I arrived in a wheelchair, with

no comment. They also have written in the record when I take notes.

One GI wrote in his notes that I brought a list of questions. LOL

Since I don't get to ask the doctor why he is noting these things, I

have a tendency to draw my own conclusions and they are not good.

Gillian what is thoracic myleopathy? MITO? So what were your

symptoms when you went to the GI doc and what kind of tests did they

do with the Endoscopy that revealed this parietal antibody attack? A

biopsy? What IS Parietal Antibody? Is that PA too? What made them

look for an autoimmune problem? I ask because I have a very high ANA

with a titre of 2500 which I keep bringing to the doctor's attention,

but without fail I am told that doesn't always mean anything at all

that a lot of normal people have elevated ANA. This reasoning makes

no sense to me. If I am sick and I have a pos ANA, why not make sure

that is not causing any problems? Why not suspect it might be

involved in what is wrong?

I have never been diagnosed with an autoimmune disease though I have

been evaluated at least 3 times. I do have antibodies to thyroid. I

have had food intolerances tested and had many, by an aternative

doctor, but just about all mainstream doctors ignore these results.

Why I don't know, since they are measuring IgG levels.

So if I am following you right, he was actually figuring out what was

wrong with your digestive tract but when he found out you had mito,

he decided it would be too complicated and you wouldn't respond as a

normal person would to treatment so he didn't want to try to treat

you? Was he the doc that gave you the trial of steroids?

So where are things with you now Gillian?

Well, I agree with someone's post who said you fight so hard to get a

diagnosis and then having one complicates things?? I really did

think that having a mito diagnosis was better than having no

diagnosis. I went for many years without a diagnosis and just

addressing symptoms, but that didn't seem to be of any help either.

My thought, is that what is really needed is a MITO CLINIC, with

specialists in each area of expertise, working with mito specialists

in a team effort. So they all get together and discuss what is best

to do. But maybe that is not so easy to do. I do see how someone

else pointed out, that doctor A wants to do one thing, and doctor B

thinks it will be a problem from the mito aspect, etc.

So, I hope that resting and ignoring mito for a few weeks might

help. I really can't think about it any more. I just hope to keep

my stomach comfortable and fed so I can do that. I have to find a GI

doc soon, and I don't know where to start. I can't ask my mito

specialist since the doc I just went to recommended him...so...

But I don't want to think about that this weekend..maybe next week.

Thanks everyone..

:-)

Adam

> 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]

I think one *must* at least let *all* doctors know that you have

a " metabolic neuromuscular disease " (NOT necessarily to give them

your official specific diagnosis - like mine is

(lately) " mitochondrial encephalopathy, Complex I defect, MELAS-

phenotype, genotype to be determined " - they'd run away screaming.

That isn't taught in medical school (or nursing school). Then, if

there is any reason you question their treatment or medications, you

can say " I have to check with my neurologist " , and do so, by phone or

fax.

They don't need the exact diagnosis to be aware of there being an

issue. If they are interested, give them more precise info.

Unfortunately, if they are not interested, this is where either us

patients or our caregivers come in, someone has to be able to

question a treatment or med if a specialist who knows nothing about

mito cannot. I think it is important to have at least one mito

specialist, local or not (mostly not is what I hear), who you can

call or fax with questions on new medications or procedures.

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]

--Surely if a patient says she has to check with another Doc. re

proposed treatment/med. that will alienate any consultant as it

could be construed as questioning his judgement within his

specialist field , to reach consultant level may have taken 20-30

years of sheer hard slog !!

Gillian

- In , " ohgminion " wrote:

>

> I think one *must* at least let *all* doctors know that you have

> a " metabolic neuromuscular disease " (NOT necessarily to give them

> your official specific diagnosis - like mine is

> (lately) " mitochondrial encephalopathy, Complex I defect, MELAS-

> phenotype, genotype to be determined " - they'd run away

screaming.

> That isn't taught in medical school (or nursing school). Then, if

> there is any reason you question their treatment or medications,

you

> can say " I have to check with my neurologist " , and do so, by phone

or

> fax.

>

> They don't need the exact diagnosis to be aware of there being an

> issue. If they are interested, give them more precise info.

> Unfortunately, if they are not interested, this is where either us

> patients or our caregivers come in, someone has to be able to

> question a treatment or med if a specialist who knows nothing

about

> mito cannot. I think it is important to have at least one mito

> specialist, local or not (mostly not is what I hear), who you can

> call or fax with questions on new medications or procedures.

>

> 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]

RH

I am with you on this!!!!

laurie

>

> Reply-To:

> Date: Sun, 03 Oct 2004 05:31:56 -0000

> To:

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

>

>

> I think one *must* at least let *all* doctors know that you have

> a " metabolic neuromuscular disease " (NOT necessarily to give them

> your official specific diagnosis - like mine is

> (lately) " mitochondrial encephalopathy, Complex I defect, MELAS-

> phenotype, genotype to be determined " - they'd run away screaming.

> That isn't taught in medical school (or nursing school). Then, if

> there is any reason you question their treatment or medications, you

> can say " I have to check with my neurologist " , and do so, by phone or

> fax.

>

> They don't need the exact diagnosis to be aware of there being an

> issue. If they are interested, give them more precise info.

> Unfortunately, if they are not interested, this is where either us

> patients or our caregivers come in, someone has to be able to

> question a treatment or med if a specialist who knows nothing about

> mito cannot. I think it is important to have at least one mito

> specialist, local or not (mostly not is what I hear), who you can

> call or fax with questions on new medications or procedures.

>

> 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.

>

>

>

>