Re: Had my GI appt yesterday...from Adam

September 30, 2004

Oh Adam,

I have been waiting for you to post after your appt. I will not use

the language I want to about the Doc...(think i would get banned)

will wait for you to recover from it ...hopefully very soon,

You must be feeling oh so down..as if you had been kicked in the

teeth after all this wait.

Gillian

> Hi,

>

> Went to the GI appt late yesterday afternoon. Very disappointing,

> but not unexpected. The doctor spent the first 15 minutes

> questioning me on my mito diagnosis, seemingly trying to confirm

> whether I had one or not. He seemed satisfied at that point, then

15

> minutes into the appt, he asked me if I had ever had counseling or

> been on antidepressants. Why? Because he thought people as sick as

I

> am can sometimes have depression as a secondary diagnosis and

taking

> the antidepressants sometimes can help move the gut more. Of

course,

> when I first became ill, I had to put up with early attempts of

> doctors to attribute my fatigue and increasing symptoms to

> depression, so I have no patience for doctors who show any similar

> tendency. I had to really concentrate to get past this question

and

> get the appt back on track.

>

> Of course, this early in the appt, he really hadn't even touched

the

> surface of my history or why I was there. I explained to him how

> much trouble I have had with meds and that I try to take as few as

> possible and that was the end of the antidepressants discussion.

> I told him that I thought I was at the point of facing never being

> able to eat food again and having to be on a central line the rest

of

> my life and I was there to get answers to that question. He

basically

> danced around answering that question directly. He reviewed my

> records, and noting that my gastric emptying study was abnormal,

and

> that I had mito, his response was that there were really no

solutions

> for me. He didn't think any of the meds used for dysmotility

would

> help me.

>

> I talked to him about the sphincter of oddi, and the ERCP that was

> recommended to me. He agreed with my decision not to have it

done.

> He said it was very risky and that he didn't think having the

> sphincterotomy would help me. He said he gave it a 25% chance of

> resolving my symptoms. He felt I would still have pain because he

> thought it was due to the dysmotility.

>

> He right away wanted to make sure I understood that he was so busy

> and couldn't really follow me. He wouldn't be able to set up

tests

> or monitor test results and could only consult. He could try to

make

> a follow up appt. We checked on the way out and it would be 6

months

> before I could get one. I wish he had just closed his practice

and I

> wouldn't have waited 5 months for him to tell me that.

>

> His only suggestions were that I might consider having a repeat

> endoscopy and take numerous biopsies of the small intestines. One

for

> sprue, and for lots of other things, but what I didn't

> understand. He did not suggest any other motility studies of my

> small intestine, which surprised me.

>

> I asked him about what I should do about eating. Whether I should

> continue to attempt solid food and he said he didn't see any

reason

> to. He said I should drink Ensure and very excitedly said you can

> live on that you know. *sigh* Well, I said I wasn't sure I would

> tolerate it. To me Ensure is like a big bottle of synthetic

vitamins

> in a milk base. Someone else on the list told me that you have to

> take about 6 cans of that a day to get the benefit. I am not able

to

> tolerate more than 2 servings of a milk drink now, and it has to

be

> spaced out from morning to night to do that. And that is when it

> isn't full of vitamins. I asked him if Ensure had fat in it and he

> said yes. I told him I wasn't tolerating fat either. He just

gave

> me a blank look. He was rushing all through the appt, as he was

40

> minutes behind schedule and had another appt after me and it was

> already 5pm.

>

> I asked him for ideas of who I could go to in the Boston area that

> could address these problems and he had no suggestions except to

go

> to the GI dept at NEMC since my mito specialist is there. I told

him

> I had already had contact with the group and since they were very

> casually pushing me to have the ERCP, when I considered it

something

> that would hurt rather than help, I was not inclined to go there.

>

> He said he would write a letter to Dr Korson and let him know what

> his recommendations were and I asked if while he was doing that if

he

> thought of anyone else I could see, he could suggest it. And that

> was it!

>

> So the whole appointment was pretty deflating and I am pretty worn

> out today, so I am going to rest. I have more input on other

> subjects on the list, but too tired to add my two cents today. :-)

>

> Later...

> :-)

> ADam

September 30, 2004

High blood ammonia can also cause lack of appetite, have you been

tested?

Take care,

RH

> Hi,

>

> Went to the GI appt late yesterday afternoon. Very disappointing,

> but not unexpected. The doctor spent the first 15 minutes

> questioning me on my mito diagnosis, seemingly trying to confirm

> whether I had one or not. He seemed satisfied at that point, then

15

> minutes into the appt, he asked me if I had ever had counseling or

> been on antidepressants. Why? Because he thought people as sick as

I

> am can sometimes have depression as a secondary diagnosis and

taking

> the antidepressants sometimes can help move the gut more. Of

course,

> when I first became ill, I had to put up with early attempts of

> doctors to attribute my fatigue and increasing symptoms to

> depression, so I have no patience for doctors who show any similar

> tendency. I had to really concentrate to get past this question

and

> get the appt back on track.

>

> Of course, this early in the appt, he really hadn't even touched

the

> surface of my history or why I was there. I explained to him how

> much trouble I have had with meds and that I try to take as few as

> possible and that was the end of the antidepressants discussion.

> I told him that I thought I was at the point of facing never being

> able to eat food again and having to be on a central line the rest

of

> my life and I was there to get answers to that question. He

basically

> danced around answering that question directly. He reviewed my

> records, and noting that my gastric emptying study was abnormal,

and

> that I had mito, his response was that there were really no

solutions

> for me. He didn't think any of the meds used for dysmotility would

> help me.

>

> I talked to him about the sphincter of oddi, and the ERCP that was

> recommended to me. He agreed with my decision not to have it

done.

> He said it was very risky and that he didn't think having the

> sphincterotomy would help me. He said he gave it a 25% chance of

> resolving my symptoms. He felt I would still have pain because he

> thought it was due to the dysmotility.

>

> He right away wanted to make sure I understood that he was so busy

> and couldn't really follow me. He wouldn't be able to set up tests

> or monitor test results and could only consult. He could try to

make

> a follow up appt. We checked on the way out and it would be 6

months

> before I could get one. I wish he had just closed his practice and

I

> wouldn't have waited 5 months for him to tell me that.

>

> His only suggestions were that I might consider having a repeat

> endoscopy and take numerous biopsies of the small intestines. One

for

> sprue, and for lots of other things, but what I didn't

> understand. He did not suggest any other motility studies of my

> small intestine, which surprised me.

>

> I asked him about what I should do about eating. Whether I should

> continue to attempt solid food and he said he didn't see any reason

> to. He said I should drink Ensure and very excitedly said you can

> live on that you know. *sigh* Well, I said I wasn't sure I would

> tolerate it. To me Ensure is like a big bottle of synthetic

vitamins

> in a milk base. Someone else on the list told me that you have to

> take about 6 cans of that a day to get the benefit. I am not able

to

> tolerate more than 2 servings of a milk drink now, and it has to be

> spaced out from morning to night to do that. And that is when it

> isn't full of vitamins. I asked him if Ensure had fat in it and he

> said yes. I told him I wasn't tolerating fat either. He just gave

> me a blank look. He was rushing all through the appt, as he was 40

> minutes behind schedule and had another appt after me and it was

> already 5pm.

>

> I asked him for ideas of who I could go to in the Boston area that

> could address these problems and he had no suggestions except to go

> to the GI dept at NEMC since my mito specialist is there. I told

him

> I had already had contact with the group and since they were very

> casually pushing me to have the ERCP, when I considered it

something

> that would hurt rather than help, I was not inclined to go there.

>

> He said he would write a letter to Dr Korson and let him know what

> his recommendations were and I asked if while he was doing that if

he

> thought of anyone else I could see, he could suggest it. And that

> was it!

>

> So the whole appointment was pretty deflating and I am pretty worn

> out today, so I am going to rest. I have more input on other

> subjects on the list, but too tired to add my two cents today. :-)

>

> Later...

> :-)

> ADam

September 30, 2004

--Sorry to here how disappointing your appointment was! If he would

not have spent so much time trying to confirm the mito dx and

dression issue....he would of had more time. That is so frustrating.

What a waste.

Take care, dawn

- In , " adamm4321 " wrote:

> Hi,

>

> Went to the GI appt late yesterday afternoon. Very disappointing,

> but not unexpected. The doctor spent the first 15 minutes

> questioning me on my mito diagnosis, seemingly trying to confirm

> whether I had one or not. He seemed satisfied at that point, then

15

> minutes into the appt, he asked me if I had ever had counseling or

> been on antidepressants. Why? Because he thought people as sick as

I

> am can sometimes have depression as a secondary diagnosis and

taking

> the antidepressants sometimes can help move the gut more. Of

course,

> when I first became ill, I had to put up with early attempts of

> doctors to attribute my fatigue and increasing symptoms to

> depression, so I have no patience for doctors who show any similar

> tendency. I had to really concentrate to get past this question

and

> get the appt back on track.

>

> Of course, this early in the appt, he really hadn't even touched

the

> surface of my history or why I was there. I explained to him how

> much trouble I have had with meds and that I try to take as few as

> possible and that was the end of the antidepressants discussion.

> I told him that I thought I was at the point of facing never being

> able to eat food again and having to be on a central line the rest

of

> my life and I was there to get answers to that question. He

basically

> danced around answering that question directly. He reviewed my

> records, and noting that my gastric emptying study was abnormal,

and

> that I had mito, his response was that there were really no

solutions

> for me. He didn't think any of the meds used for dysmotility

would

> help me.

>

> I talked to him about the sphincter of oddi, and the ERCP that was

> recommended to me. He agreed with my decision not to have it

done.

> He said it was very risky and that he didn't think having the

> sphincterotomy would help me. He said he gave it a 25% chance of

> resolving my symptoms. He felt I would still have pain because he

> thought it was due to the dysmotility.

>

> He right away wanted to make sure I understood that he was so busy

> and couldn't really follow me. He wouldn't be able to set up

tests

> or monitor test results and could only consult. He could try to

make

> a follow up appt. We checked on the way out and it would be 6

months

> before I could get one. I wish he had just closed his practice

and I

> wouldn't have waited 5 months for him to tell me that.

>

> His only suggestions were that I might consider having a repeat

> endoscopy and take numerous biopsies of the small intestines. One

for

> sprue, and for lots of other things, but what I didn't

> understand. He did not suggest any other motility studies of my

> small intestine, which surprised me.

>

> I asked him about what I should do about eating. Whether I should

> continue to attempt solid food and he said he didn't see any

reason

> to. He said I should drink Ensure and very excitedly said you can

> live on that you know. *sigh* Well, I said I wasn't sure I would

> tolerate it. To me Ensure is like a big bottle of synthetic

vitamins

> in a milk base. Someone else on the list told me that you have to

> take about 6 cans of that a day to get the benefit. I am not able

to

> tolerate more than 2 servings of a milk drink now, and it has to

be

> spaced out from morning to night to do that. And that is when it

> isn't full of vitamins. I asked him if Ensure had fat in it and he

> said yes. I told him I wasn't tolerating fat either. He just

gave

> me a blank look. He was rushing all through the appt, as he was

40

> minutes behind schedule and had another appt after me and it was

> already 5pm.

>

> I asked him for ideas of who I could go to in the Boston area that

> could address these problems and he had no suggestions except to

go

> to the GI dept at NEMC since my mito specialist is there. I told

him

> I had already had contact with the group and since they were very

> casually pushing me to have the ERCP, when I considered it

something

> that would hurt rather than help, I was not inclined to go there.

>

> He said he would write a letter to Dr Korson and let him know what

> his recommendations were and I asked if while he was doing that if

he

> thought of anyone else I could see, he could suggest it. And that

> was it!

>

> So the whole appointment was pretty deflating and I am pretty worn

> out today, so I am going to rest. I have more input on other

> subjects on the list, but too tired to add my two cents today. :-)

>

> Later...

> :-)

> ADam

September 30, 2004

Hi Adam, If you are looking for a complete-nutrition liquid food

product low in fat, I can recommend Advera or ProSure. In both, the

fat content is about 15% of the calories. Most complete-nutrition

liquid products have at least 30-40% fat because they are designed

to help people gain weight. Advera was specifically developed for

HIV patients (who have a fat intolerance) and ProSure was developed

for cancer patients who need to rebuild body mass and muscle. Both

are lactose and gluten free and work well for me. You can buy them

on the web by the case, but we get them through Apria, the

designated supplier for our insurance. Most health insurance plans

do not cover the cost of enteral food products, but Apria sells us

the product at a huge discount over full retail, $30 something a

case instead of over $100. If you want to try Advera or Prosure to

see if you tolerate it before buying a case, we'd be happy to mail

you a can or two.

Barbara

PS Have you thought about taking a copy of your mito diagnosis

report when you see a new doctor? I usually do this so we don't have

to waste precious time establishing the diagnosis. In fact, I

usually mail this in a week or two in advance. Gives them the option

to bone up a bit if they choose to do so.

> Hi,

>

> Went to the GI appt late yesterday afternoon. Very disappointing,

> but not unexpected. The doctor spent the first 15 minutes

> questioning me on my mito diagnosis, seemingly trying to confirm

> whether I had one or not. He seemed satisfied at that point, then

15

> minutes into the appt, he asked me if I had ever had counseling or

> been on antidepressants. Why? Because he thought people as sick as

I

> am can sometimes have depression as a secondary diagnosis and

taking

> the antidepressants sometimes can help move the gut more. Of

course,

> when I first became ill, I had to put up with early attempts of

> doctors to attribute my fatigue and increasing symptoms to

> depression, so I have no patience for doctors who show any similar

> tendency. I had to really concentrate to get past this question

and

> get the appt back on track.

>

> Of course, this early in the appt, he really hadn't even touched

the

> surface of my history or why I was there. I explained to him how

> much trouble I have had with meds and that I try to take as few as

> possible and that was the end of the antidepressants discussion.

> I told him that I thought I was at the point of facing never being

> able to eat food again and having to be on a central line the rest

of

> my life and I was there to get answers to that question. He

basically

> danced around answering that question directly. He reviewed my

> records, and noting that my gastric emptying study was abnormal,

and

> that I had mito, his response was that there were really no

solutions

> for me. He didn't think any of the meds used for dysmotility

would

> help me.

>

> I talked to him about the sphincter of oddi, and the ERCP that was

> recommended to me. He agreed with my decision not to have it

done.

> He said it was very risky and that he didn't think having the

> sphincterotomy would help me. He said he gave it a 25% chance of

> resolving my symptoms. He felt I would still have pain because he

> thought it was due to the dysmotility.

>

> He right away wanted to make sure I understood that he was so busy

> and couldn't really follow me. He wouldn't be able to set up

tests

> or monitor test results and could only consult. He could try to

make

> a follow up appt. We checked on the way out and it would be 6

months

> before I could get one. I wish he had just closed his practice

and I

> wouldn't have waited 5 months for him to tell me that.

>

> His only suggestions were that I might consider having a repeat

> endoscopy and take numerous biopsies of the small intestines. One

for

> sprue, and for lots of other things, but what I didn't

> understand. He did not suggest any other motility studies of my

> small intestine, which surprised me.

>

> I asked him about what I should do about eating. Whether I should

> continue to attempt solid food and he said he didn't see any

reason

> to. He said I should drink Ensure and very excitedly said you can

> live on that you know. *sigh* Well, I said I wasn't sure I would

> tolerate it. To me Ensure is like a big bottle of synthetic

vitamins

> in a milk base. Someone else on the list told me that you have to

> take about 6 cans of that a day to get the benefit. I am not able

to

> tolerate more than 2 servings of a milk drink now, and it has to

be

> spaced out from morning to night to do that. And that is when it

> isn't full of vitamins. I asked him if Ensure had fat in it and he

> said yes. I told him I wasn't tolerating fat either. He just

gave

> me a blank look. He was rushing all through the appt, as he was

40

> minutes behind schedule and had another appt after me and it was

> already 5pm.

>

> I asked him for ideas of who I could go to in the Boston area that

> could address these problems and he had no suggestions except to

go

> to the GI dept at NEMC since my mito specialist is there. I told

him

> I had already had contact with the group and since they were very

> casually pushing me to have the ERCP, when I considered it

something

> that would hurt rather than help, I was not inclined to go there.

>

> He said he would write a letter to Dr Korson and let him know what

> his recommendations were and I asked if while he was doing that if

he

> thought of anyone else I could see, he could suggest it. And that

> was it!

>

> So the whole appointment was pretty deflating and I am pretty worn

> out today, so I am going to rest. I have more input on other

> subjects on the list, but too tired to add my two cents today. :-)

>

> Later...

> :-)

> ADam

September 30, 2004

Adam,

I am so sorry it was such a disappointment. I DO know the whole

scenario. Irritating to the max. Anger, frustration, indignation. I

stopped going to GI idiots 10 years ago. But, my problems are not

nearly as severe as yours, so I can cope without their arrogant,

ignorant, poor excuse for practicing medicine. (That felt better, I get

worked up just thinking about their garbage, and usually won't let

myself go there. Sorry for the strong language!) But, I do realize

that you need someone to try everything possible for you.

The pain being due to dysmotility is something to try to follow up on.

A repeat endoscopy might also shed some light, although I would want it

done by the right person. In my opinion, with so many of the tests,

the docs' expetations will influence what they " find " .

Perhaps someone here on the list can give you more specific

suggestions. Some of the meds MIGHT be worth considering. Perhaps

there is a GI person that is really sympathetic to mito involvement,

even if you have to travel. I wish there were more that someone has to

offer you.

Take care, Adam, do everything you know how to cater to your body, and

have hope in the healing process.

Hugs, Adam

Sunny

> Hi,

>

> Went to the GI appt late yesterday afternoon. Very disappointing,

> but not unexpected. The doctor spent the first 15 minutes

> questioning me on my mito diagnosis, seemingly trying to confirm

> whether I had one or not. He seemed satisfied at that point, then 15

> minutes into the appt, he asked me if I had ever had counseling or

> been on antidepressants. Why? Because he thought people as sick as I

> am can sometimes have depression as a secondary diagnosis and taking

> the antidepressants sometimes can help move the gut more. Of course,

> when I first became ill, I had to put up with early attempts of

> doctors to attribute my fatigue and increasing symptoms to

> depression, so I have no patience for doctors who show any similar

> tendency. I had to really concentrate to get past this question and

> get the appt back on track.

>

> Of course, this early in the appt, he really hadn't even touched the

> surface of my history or why I was there. I explained to him how

> much trouble I have had with meds and that I try to take as few as

> possible and that was the end of the antidepressants discussion.

> I told him that I thought I was at the point of facing never being

> able to eat food again and having to be on a central line the rest of

> my life and I was there to get answers to that question. He basically

> danced around answering that question directly. He reviewed my

> records, and noting that my gastric emptying study was abnormal, and

> that I had mito, his response was that there were really no solutions

> for me. He didn't think any of the meds used for dysmotility would

> help me.

>

> I talked to him about the sphincter of oddi, and the ERCP that was

> recommended to me. He agreed with my decision not to have it done.

> He said it was very risky and that he didn't think having the

> sphincterotomy would help me. He said he gave it a 25% chance of

> resolving my symptoms. He felt I would still have pain because he

> thought it was due to the dysmotility.

>

> He right away wanted to make sure I understood that he was so busy

> and couldn't really follow me. He wouldn't be able to set up tests

> or monitor test results and could only consult. He could try to make

> a follow up appt. We checked on the way out and it would be 6 months

> before I could get one. I wish he had just closed his practice and I

> wouldn't have waited 5 months for him to tell me that.

>

> His only suggestions were that I might consider having a repeat

> endoscopy and take numerous biopsies of the small intestines. One for

> sprue, and for lots of other things, but what I didn't

> understand. He did not suggest any other motility studies of my

> small intestine, which surprised me.

>

> I asked him about what I should do about eating. Whether I should

> continue to attempt solid food and he said he didn't see any reason

> to. He said I should drink Ensure and very excitedly said you can

> live on that you know. *sigh* Well, I said I wasn't sure I would

> tolerate it. To me Ensure is like a big bottle of synthetic vitamins

> in a milk base. Someone else on the list told me that you have to

> take about 6 cans of that a day to get the benefit. I am not able to

> tolerate more than 2 servings of a milk drink now, and it has to be

> spaced out from morning to night to do that. And that is when it

> isn't full of vitamins. I asked him if Ensure had fat in it and he

> said yes. I told him I wasn't tolerating fat either. He just gave

> me a blank look. He was rushing all through the appt, as he was 40

> minutes behind schedule and had another appt after me and it was

> already 5pm.

>

> I asked him for ideas of who I could go to in the Boston area that

> could address these problems and he had no suggestions except to go

> to the GI dept at NEMC since my mito specialist is there. I told him

> I had already had contact with the group and since they were very

> casually pushing me to have the ERCP, when I considered it something

> that would hurt rather than help, I was not inclined to go there.

>

> He said he would write a letter to Dr Korson and let him know what

> his recommendations were and I asked if while he was doing that if he

> thought of anyone else I could see, he could suggest it. And that

> was it!

>

> So the whole appointment was pretty deflating and I am pretty worn

> out today, so I am going to rest. I have more input on other

> subjects on the list, but too tired to add my two cents today. :-)

>

> Later...

> :-)

> ADam

>

> 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.

>

September 30, 2004

Hi Gillian,

Managed to get a 2 hour nap this afternoon which is pretty unusual

for me. I am hoping I can do the same tomorrow.

Thanks for your support. Yes, the doctor's appointment was stressful,

but most doctor's appointments leave a lot to be desired, so I am as

used to it as I am going to get, I guess. I basically have only one

doctor that I really look forward to seeing and that is my mito

specialist. At least that is one more doctor than I used to have. It

actually is a very long time since I had ANY doctor that I felt good

about, so I guess I am ahead of the game.

Yes, I am pretty discouraged, but I have been able to keep up fluids

and shakes all week, after being worse last weekend, so that is

something to be grateful for.

I will be back, when I have had some time to rest.

Thanks Gillian,

:-)

Adam

-- In , " gillianstumps " wrote:

> Oh Adam,

> I have been waiting for you to post after your appt. I will not use

> the language I want to about the Doc...(think i would get banned)

>

> will wait for you to recover from it ...hopefully very soon,

> You must be feeling oh so down..as if you had been kicked in the

> teeth after all this wait.

>

> Gillian

>

> > Hi,

> >

> > Went to the GI appt late yesterday afternoon. Very

disappointing, > > but not unexpected. The doctor spent the first 15

minutes > > questioning me on my mito diagnosis, seemingly trying to

confirm > > whether I had one or not. He seemed satisfied at that

point, then > 15 > > minutes into the appt, he asked me if I had ever

had counseling or > > been on antidepressants. Why? Because he

thought people as sick as > I > > am can sometimes have depression as

a secondary diagnosis and > taking > > the antidepressants sometimes

can help move the gut more. Of > course, > > when I first became ill,

I had to put up with early attempts of > > doctors to attribute my

fatigue and increasing symptoms to > > depression, so I have no

patience for doctors who show any similar > > tendency. I had to

really concentrate to get past this question > and > > get the appt

back on track.

> >

> > Of course, this early in the appt, he really hadn't even touched

> the > > surface of my history or why I was there. I explained to

him how > > much trouble I have had with meds and that I try to take

as few as > > possible and that was the end of the antidepressants

discussion.> > I told him that I thought I was at the point of facing

never being > > able to eat food again and having to be on a central

line the rest > of > > my life and I was there to get answers to that

question. He > basically > > danced around answering that question

directly. He reviewed my> > records, and noting that my gastric

emptying study was abnormal, > and > > that I had mito, his response

was that there were really no > solutions > > for me. He didn't

think any of the meds used for dysmotility> would > > help me.

> >

> > I talked to him about the sphincter of oddi, and the ERCP that

was > > recommended to me. He agreed with my decision not to have it

> done. > > He said it was very risky and that he didn't think

having the > > sphincterotomy would help me. He said he gave it a

25% chance of > > resolving my symptoms. He felt I would still have

pain because he > > thought it was due to the dysmotility.

> >

> > He right away wanted to make sure I understood that he was so

busy > > and couldn't really follow me. He wouldn't be able to set

up > tests > > or monitor test results and could only consult. He

could try to > make > > a follow up appt. We checked on the way out

and it would be 6 > months > > before I could get one. I wish he had

just closed his practice > and I > > wouldn't have waited 5 months

for him to tell me that.

> >

> > His only suggestions were that I might consider having a repeat

> > endoscopy and take numerous biopsies of the small intestines. One

> for > > sprue, and for lots of other things, but what I didn't

> > understand. He did not suggest any other motility studies of my

> > small intestine, which surprised me.

> >

> > I asked him about what I should do about eating. Whether I

should > > continue to attempt solid food and he said he didn't see

any > reason > > to. He said I should drink Ensure and very

excitedly said you can > > live on that you know. *sigh* Well, I

said I wasn't sure I would > > tolerate it. To me Ensure is like a

big bottle of synthetic > vitamins > > in a milk base. Someone else

on the list told me that you have to > > take about 6 cans of that a

day to get the benefit. I am not able > to > > tolerate more than 2

servings of a milk drink now, and it has to > be > > spaced out from

morning to night to do that. And that is when it> > isn't full of

vitamins. I asked him if Ensure had fat in it and he > > said yes. I

told him I wasn't tolerating fat either. He just > gave > > me a

blank look. He was rushing all through the appt, as he was > 40

> > minutes behind schedule and had another appt after me and it was

> > already 5pm.

> >

> > I asked him for ideas of who I could go to in the Boston area

that > > could address these problems and he had no suggestions

except to > go > > to the GI dept at NEMC since my mito specialist is

there. I told > him > > I had already had contact with the group and

since they were very > > casually pushing me to have the ERCP, when I

considered it > something > > that would hurt rather than help, I was

not inclined to go there. > >

> > He said he would write a letter to Dr Korson and let him know

what > > his recommendations were and I asked if while he was doing

that if > he > > thought of anyone else I could see, he could suggest

it. And that > > was it!

> >

> > So the whole appointment was pretty deflating and I am pretty

worn > > out today, so I am going to rest. I have more input on other

> > subjects on the list, but too tired to add my two cents today.

:-)

> >

> > Later...

> > :-)

> > ADam

September 30, 2004

Hi RH,

I haven't yet had a high ammonia blood level. I actually don't have

a LACK of appetite. I would love to eat more, but my stomach doesn't

want to cooperate. I have only had maybe one or two ammonia checks

done. Is that something that changes often? How often do you get it

checked, and are there certain times to check it, like when you are

feeling worse, or anything?

Thanks,

Adam

> High blood ammonia can also cause lack of appetite, have you been

> tested?

>

> Take care,

> RH

>

September 30, 2004

Hi Sunny, :-)

Yes, I did that for many years. Just stayed as far from doctors as I

possibly could. You end up coping on your own anyway, and sometimes

figuring out things yourself too. Actually, a lot of the stress from

appointments, the tests, the procedures they want you to have, the

other specialists they want you to see. The whole process just makes

you worse, wears you out, at precisely the time you need as much

energy as you can get. When it is all for naught, it is beyond

frustrating. *sigh*

Actually, reading the list last week, and listening to a few people

who were having a worsening of symptoms and going to doctors and

having tests and getting worse, made me realize that after the

surgery and then another week in the hospital and all the tests and

stress and medicines, that maybe I wasn't taking into consideration

how worn down I was and that might be making it hard for my digestive

system to have enough energy.

So that is what I was doing before the GI appt and that is what I am

going to focus on now, is just getting as much rest and as much food

as I can for now and see if I can improve a little bit.

For now, as long as I can keep up the liquids and the calories, I am

not in any hurry to do any more investigations. There would have to

be a very compelling reason for me to subject myself to more testing

with a good benefit/risk ratio. Time to regroup and get a little

stronger.

Thanks for the support Sunny, and hope you are doing ok this week.

:-)

Adam

> Adam,

> I am so sorry it was such a disappointment. I DO know the whole

> scenario. Irritating to the max. Anger, frustration,

indignation. I > stopped going to GI idiots 10 years ago. But, my

problems are not > nearly as severe as yours, so I can cope without

their arrogant, > ignorant, poor excuse for practicing medicine.

(That felt better, I get > worked up just thinking about their

garbage, and usually won't let > myself go there. Sorry for the

strong language!) But, I do realize > that you need someone to try

everything possible for you.

>

> The pain being due to dysmotility is something to try to follow up

on. > A repeat endoscopy might also shed some light, although I

would want it > done by the right person. In my opinion, with so

many of the tests, > the docs' expetations will influence what

they " find " .

>

> Perhaps someone here on the list can give you more specific

> suggestions. Some of the meds MIGHT be worth considering. Perhaps

> there is a GI person that is really sympathetic to mito

involvement, > even if you have to travel. I wish there were more

that someone has to > offer you.

>

> Take care, Adam, do everything you know how to cater to your body,

and > have hope in the healing process.

>

> Hugs, Adam

>

> Sunny

> > Hi,

> >

> > Went to the GI appt late yesterday afternoon. Very

disappointing,> > but not unexpected. The doctor spent the first

15

minutes> > questioning me on my mito diagnosis, seemingly trying to

confirm> > whether I had one or not. He seemed satisfied at that

point, then 15> > minutes into the appt, he asked me if I had ever

had counseling or> > been on antidepressants. Why? Because he

thought people as sick as I> > am can sometimes have depression as a

secondary diagnosis and taking> > the antidepressants sometimes can

help move the gut more. Of course,> > when I first became ill, I had

to put up with early attempts of> > doctors to attribute my fatigue

and increasing symptoms to> > depression, so I have no patience for

doctors who show any similar> > tendency. I had to really

concentrate to get past this question and> > get the appt back on

track.

> >

> > Of course, this early in the appt, he really hadn't even touched

the> > surface of my history or why I was there. I explained to

him

how> > much trouble I have had with meds and that I try to take as

few as> > possible and that was the end of the antidepressants

discussion.

> > I told him that I thought I was at the point of facing never

being> > able to eat food again and having to be on a central line

the rest of> > my life and I was there to get answers to that

question. He basically> > danced around answering that question

directly. He reviewed my> > records, and noting that my gastric

emptying study was abnormal, and> > that I had mito, his response

was that there were really no solutions> > for me. He didn't

think

any of the meds used for dysmotility would> > help me.

> >

> > I talked to him about the sphincter of oddi, and the ERCP that

was> > recommended to me. He agreed with my decision not to have

it

done. > > He said it was very risky and that he didn't think

having

the> > sphincterotomy would help me. He said he gave it a 25%

chance of> > resolving my symptoms. He felt I would still have

pain

because he> > thought it was due to the dysmotility.

> >

> > He right away wanted to make sure I understood that he was so

busy> > and couldn't really follow me. He wouldn't be able to

set

up tests> > or monitor test results and could only consult. He

could try to make> > a follow up appt. We checked on the way out

and it would be 6 months> > before I could get one. I wish he

had

just closed his practice and I> > wouldn't have waited 5 months for

him to tell me that.

> >

> > His only suggestions were that I might consider having a repeat

> > endoscopy and take numerous biopsies of the small intestines.

One for> > sprue, and for lots of other things, but what I didn't

> > understand. He did not suggest any other motility studies of

my

> > small intestine, which surprised me.

> >

> > I asked him about what I should do about eating. Whether I

should> > continue to attempt solid food and he said he didn't see

any reason> > to. He said I should drink Ensure and very

excitedly

said you can> > live on that you know. *sigh* Well, I said I

wasn't sure I would> > tolerate it. To me Ensure is like a big

bottle of synthetic vitamins> > in a milk base. Someone else on the

list told me that you have to> > take about 6 cans of that a day to

get the benefit. I am not able to> > tolerate more than 2

servings

of a milk drink now, and it has to be> > spaced out from morning to

night to do that. And that is when it> > isn't full of vitamins.

I

asked him if Ensure had fat in it and he> > said yes. I told him

I

wasn't tolerating fat either. He just gave> > me a blank

look. He

was rushing all through the appt, as he was 40> > minutes behind

schedule and had another appt after me and it was> > already 5pm.

> >

> > I asked him for ideas of who I could go to in the Boston area

that> > could address these problems and he had no suggestions

except to go> > to the GI dept at NEMC since my mito specialist is

there. I told him> > I had already had contact with the group

and

since they were very> > casually pushing me to have the ERCP, when I

considered it something> > that would hurt rather than help, I was

not inclined to go there.

> >

> > He said he would write a letter to Dr Korson and let him know

what> > his recommendations were and I asked if while he was doing

that if he> > thought of anyone else I could see, he could suggest

it. And that> > was it!

> >

> > So the whole appointment was pretty deflating and I am pretty

worn> > out today, so I am going to rest. I have more input on

other

> > subjects on the list, but too tired to add my two cents

today. :-)

> >

> > Later...

> > :-)

> > ADam

> >

September 30, 2004

Hi, Adam

That sounds like a very good plan, Adam. All the medical

procedures/appointments really do take a lot out of us. Pampering the

body every way we know how - rest, activity, best possible nutrition,

and as many joyful things as we can fit in - can only help us.

Thank you for your good wishes. I am doing OK at the moment. LOL But

my weather changes so quickly - I can feel fine and then in just a snap

the curtain can go down, and I am all but useless for a while. But, I

have learned that I do feel better again after not too long. So,

trying to watch what variable might be causing the down side, and

always planning my time carefully so that I get my priorities taken

care of before the energy gets drained lets me get through a good part

of my days with enjoyment and peace.

Take care, Adam

Sunny

> Hi Sunny, :-)

>

> Yes, I did that for many years. Just stayed as far from doctors as I

> possibly could. You end up coping on your own anyway, and sometimes

> figuring out things yourself too. Actually, a lot of the stress from

> appointments, the tests, the procedures they want you to have, the

> other specialists they want you to see. The whole process just makes

> you worse, wears you out, at precisely the time you need as much

> energy as you can get. When it is all for naught, it is beyond

> frustrating. *sigh*

>

> Actually, reading the list last week, and listening to a few people

> who were having a worsening of symptoms and going to doctors and

> having tests and getting worse, made me realize that after the

> surgery and then another week in the hospital and all the tests and

> stress and medicines, that maybe I wasn't taking into consideration

> how worn down I was and that might be making it hard for my digestive

> system to have enough energy.

>

> So that is what I was doing before the GI appt and that is what I am

> going to focus on now, is just getting as much rest and as much food

> as I can for now and see if I can improve a little bit.

>

> For now, as long as I can keep up the liquids and the calories, I am

> not in any hurry to do any more investigations. There would have to

> be a very compelling reason for me to subject myself to more testing

> with a good benefit/risk ratio. Time to regroup and get a little

> stronger.

>

> Thanks for the support Sunny, and hope you are doing ok this week.

> :-)

> Adam

>

> > Adam,

> > I am so sorry it was such a disappointment. I DO know the whole

> > scenario. Irritating to the max. Anger, frustration,

> indignation. I > stopped going to GI idiots 10 years ago. But, my

> problems are not > nearly as severe as yours, so I can cope without

> their arrogant, > ignorant, poor excuse for practicing medicine.

> (That felt better, I get > worked up just thinking about their

> garbage, and usually won't let > myself go there. Sorry for the

> strong language!) But, I do realize > that you need someone to try

> everything possible for you.

> >

> > The pain being due to dysmotility is something to try to follow up

> on. > A repeat endoscopy might also shed some light, although I

> would want it > done by the right person. In my opinion, with so

> many of the tests, > the docs' expetations will influence what

> they " find " .

> >

> > Perhaps someone here on the list can give you more specific

> > suggestions. Some of the meds MIGHT be worth considering. Perhaps

> > there is a GI person that is really sympathetic to mito

> involvement, > even if you have to travel. I wish there were more

> that someone has to > offer you.

> >

> > Take care, Adam, do everything you know how to cater to your body,

> and > have hope in the healing process.

> >

> > Hugs, Adam

> >

> > Sunny

> > > Hi,

> > >

> > > Went to the GI appt late yesterday afternoon. Very

> disappointing,> > but not unexpected. The doctor spent the first

> 15

> minutes> > questioning me on my mito diagnosis, seemingly trying to

> confirm> > whether I had one or not. He seemed satisfied at that

> point, then 15> > minutes into the appt, he asked me if I had ever

> had counseling or> > been on antidepressants. Why? Because he

> thought people as sick as I> > am can sometimes have depression as a

> secondary diagnosis and taking> > the antidepressants sometimes can

> help move the gut more. Of course,> > when I first became ill, I had

> to put up with early attempts of> > doctors to attribute my fatigue

> and increasing symptoms to> > depression, so I have no patience for

> doctors who show any similar> > tendency. I had to really

> concentrate to get past this question and> > get the appt back on

> track.

> > >

> > > Of course, this early in the appt, he really hadn't even touched

> the> > surface of my history or why I was there. I explained to

> him

> how> > much trouble I have had with meds and that I try to take as

> few as> > possible and that was the end of the antidepressants

> discussion.

> > > I told him that I thought I was at the point of facing never

> being> > able to eat food again and having to be on a central line

> the rest of> > my life and I was there to get answers to that

> question. He basically> > danced around answering that question

> directly. He reviewed my> > records, and noting that my gastric

> emptying study was abnormal, and> > that I had mito, his response

> was that there were really no solutions> > for me. He didn't

> think

> any of the meds used for dysmotility would> > help me.

> > >

> > > I talked to him about the sphincter of oddi, and the ERCP that

> was> > recommended to me. He agreed with my decision not to have

> it

> done. > > He said it was very risky and that he didn't think

> having

> the> > sphincterotomy would help me. He said he gave it a 25%

> chance of> > resolving my symptoms. He felt I would still have

> pain

> because he> > thought it was due to the dysmotility.

> > >

> > > He right away wanted to make sure I understood that he was so

> busy> > and couldn't really follow me. He wouldn't be able to

> set

> up tests> > or monitor test results and could only consult. He

> could try to make> > a follow up appt. We checked on the way out

> and it would be 6 months> > before I could get one. I wish he

> had

> just closed his practice and I> > wouldn't have waited 5 months for

> him to tell me that.

> > >

> > > His only suggestions were that I might consider having a repeat

> > > endoscopy and take numerous biopsies of the small intestines.

> One for> > sprue, and for lots of other things, but what I didn't

> > > understand. He did not suggest any other motility studies of

> my

> > > small intestine, which surprised me.

> > >

> > > I asked him about what I should do about eating. Whether I

> should> > continue to attempt solid food and he said he didn't see

> any reason> > to. He said I should drink Ensure and very

> excitedly

> said you can> > live on that you know. *sigh* Well, I said I

> wasn't sure I would> > tolerate it. To me Ensure is like a big

> bottle of synthetic vitamins> > in a milk base. Someone else on the

> list told me that you have to> > take about 6 cans of that a day to

> get the benefit. I am not able to> > tolerate more than 2

> servings

> of a milk drink now, and it has to be> > spaced out from morning to

> night to do that. And that is when it> > isn't full of vitamins.

> I

> asked him if Ensure had fat in it and he> > said yes. I told him

> I

> wasn't tolerating fat either. He just gave> > me a blank

> look. He

> was rushing all through the appt, as he was 40> > minutes behind

> schedule and had another appt after me and it was> > already 5pm.

> > >

> > > I asked him for ideas of who I could go to in the Boston area

> that> > could address these problems and he had no suggestions

> except to go> > to the GI dept at NEMC since my mito specialist is

> there. I told him> > I had already had contact with the group

> and

> since they were very> > casually pushing me to have the ERCP, when I

> considered it something> > that would hurt rather than help, I was

> not inclined to go there.

> > >

> > > He said he would write a letter to Dr Korson and let him know

> what> > his recommendations were and I asked if while he was doing

> that if he> > thought of anyone else I could see, he could suggest

> it. And that> > was it!

> > >

> > > So the whole appointment was pretty deflating and I am pretty

> worn> > out today, so I am going to rest. I have more input on

> other

> > > subjects on the list, but too tired to add my two cents

> today. :-)

> > >

> > > Later...

> > > :-)

> > > ADam

> > >

>

> 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.

>

September 30, 2004

I am so sorry Drs can be so full of them selves we have run in to this allot

with Duane's DRs we just lost out nuro DR now we have to start al over

again and he was a good nuro I don't have hope that we will find another one

like him :-(

I hope you are feeling better

Hugs Jan

Had my GI appt yesterday...from Adam