Re: Adam

[Guest guest]

Hi Gililan and Debra,

First of all, I have not gotten any subset of mito diagnosis at this

point. No, I haven't been given any steroids. Yes, I have been

told years ago by an alternative doctor I may have some adrenal

fatigue going on. I had one kidney removed in 2003 and they were

able to leave the adrenal gland so I still have two.

As for my BP. The GI doc in the hospital suggested that it was low

from not eating and drinking enough. As a matter of fact, for a six

week period in the summer, before the gallbladder surgery, I was

having daily headaches that were pulsating and pounding and would

start off when I woke up in the morning. My pressure readings were

130/90 every time they took it during this period. During my hospital

stay, it averaged around 90/60.

I was just evaluated over the summer for dysautonomia, but since

during that period my pressure was high, they said I didn't have it.

I don't have any tachycardia. When I was in the ER yesterday it was

112/72. Can you depend on the automatic blood pressure cuff?

Yes, they checked my amylase and lipase. That is the confusing part,

with the sphincter of oddi condition it is usual to expect these

enzymes to be elevated and mine arent.

The pain that I experience is most definitely triggered by eating. It

has not been over the top pain, but moderate. But if I keep eating

or drinking once the pain starts up, it usually keeps escalating and

I am sure if I didn't stop it could get over the top. If I don't

eat, it subsides and improves. Last time it took 6 days. From

figuring what I feel and what I am experiencing, what triggers it and

when it resolves, I am convinced it is some process of eating that is

not working right. It could be more than one problem going on at the

same time.

The test that came back abnormal was the stomach emptying test. I had

elevated LFTs after taking percocet that made me sick. There was some

mention of " possible " sprue being seen on an upper GI by one doctor

and another doctor said my test was normal. But I had a biopsy of the

small intestine last summer that showed negative for Celiac Disease.

I had a normal MRCP, and ultrasound.

You can see why it is confusing. I don't know, do they have GI docs

that handle complex cases? I hate to think of starting over from

scratch. You know what it is like to get a new appt with a new

doctor. Especially if he is any good.

Adam

> Adam, I am sure you might have mentioned this before and I can't

find it but have any of these doctors checked your amylase levels?

It sure sounds like you have pancreatitis secondary to all the

manipulation of removing your gallbladder. If you don't know for

sure I would check into this.

>

> Best Wishes,

> Debra

>

>

[Guest guest]

Hi again Adam...you do have so much going on...my pain that i

thought was food/stomach .. after loads of tests was kidney and

adrenal..the gastro recognised a pattern on examination and

questioning..he was proved right...did you follow up what the

alternative doc. said about adrenal fatigue..that is found in mito.

which is hardly surprising really..

As I am UK don't know how you would go about getting it evaluated

but it may be worth following it up...I have hydrocortisone

prescribed for days when I know my body is up the creek..very low

dose used only 3 times in 9 months but it really helps. When

adrenals really stressed get a funny headache and low backache and

food gets STUCK in pit of stomach alongside other things...horrible

feeling.

Gilian

-- In , " adamm4321 " wrote:

> Hi Gililan and Debra,

>

> First of all, I have not gotten any subset of mito diagnosis at

this

> point. No, I haven't been given any steroids. Yes, I have been

> told years ago by an alternative doctor I may have some adrenal

> fatigue going on. I had one kidney removed in 2003 and they were

> able to leave the adrenal gland so I still have two.

>

> As for my BP. The GI doc in the hospital suggested that it was

low

> from not eating and drinking enough. As a matter of fact, for a

six

> week period in the summer, before the gallbladder surgery, I was

> having daily headaches that were pulsating and pounding and would

> start off when I woke up in the morning. My pressure readings

were

> 130/90 every time they took it during this period. During my

hospital

> stay, it averaged around 90/60.

>

> I was just evaluated over the summer for dysautonomia, but since

> during that period my pressure was high, they said I didn't have

it.

> I don't have any tachycardia. When I was in the ER yesterday it

was

> 112/72. Can you depend on the automatic blood pressure cuff?

>

> Yes, they checked my amylase and lipase. That is the confusing

part,

> with the sphincter of oddi condition it is usual to expect these

> enzymes to be elevated and mine arent.

>

> The pain that I experience is most definitely triggered by eating.

It

> has not been over the top pain, but moderate. But if I keep

eating

> or drinking once the pain starts up, it usually keeps escalating

and

> I am sure if I didn't stop it could get over the top. If I don't

> eat, it subsides and improves. Last time it took 6 days. From

> figuring what I feel and what I am experiencing, what triggers it

and

> when it resolves, I am convinced it is some process of eating that

is

> not working right. It could be more than one problem going on at

the

> same time.

>

> The test that came back abnormal was the stomach emptying test. I

had

> elevated LFTs after taking percocet that made me sick. There was

some

> mention of " possible " sprue being seen on an upper GI by one

doctor

> and another doctor said my test was normal. But I had a biopsy of

the

> small intestine last summer that showed negative for Celiac

Disease.

> I had a normal MRCP, and ultrasound.

>

> You can see why it is confusing. I don't know, do they have GI

docs

> that handle complex cases? I hate to think of starting over from

> scratch. You know what it is like to get a new appt with a new

> doctor. Especially if he is any good.

>

> Adam

>

>

>

>

>

>

>

>

> > Adam, I am sure you might have mentioned this before and I can't

> find it but have any of these doctors checked your amylase

levels?

> It sure sounds like you have pancreatitis secondary to all the

> manipulation of removing your gallbladder. If you don't know for

> sure I would check into this.

> >

> > Best Wishes,

> > Debra

> >

> >

[Guest guest]

Did they do the antibody test for Coeliac ..my biopsy was negative

but the IgG antibody for it were highly positive which gastro said

is gluten intolerance causing IBS..have found sometimes the biopsy

readings can vary according to who does them!!!

Gillian

-- In , " adamm4321 " wrote:

> Hi Gililan and Debra,

>

> First of all, I have not gotten any subset of mito diagnosis at

this

> point. No, I haven't been given any steroids. Yes, I have been

> told years ago by an alternative doctor I may have some adrenal

> fatigue going on. I had one kidney removed in 2003 and they were

> able to leave the adrenal gland so I still have two.

>

> As for my BP. The GI doc in the hospital suggested that it was

low

> from not eating and drinking enough. As a matter of fact, for a

six

> week period in the summer, before the gallbladder surgery, I was

> having daily headaches that were pulsating and pounding and would

> start off when I woke up in the morning. My pressure readings

were

> 130/90 every time they took it during this period. During my

hospital

> stay, it averaged around 90/60.

>

> I was just evaluated over the summer for dysautonomia, but since

> during that period my pressure was high, they said I didn't have

it.

> I don't have any tachycardia. When I was in the ER yesterday it

was

> 112/72. Can you depend on the automatic blood pressure cuff?

>

> Yes, they checked my amylase and lipase. That is the confusing

part,

> with the sphincter of oddi condition it is usual to expect these

> enzymes to be elevated and mine arent.

>

> The pain that I experience is most definitely triggered by eating.

It

> has not been over the top pain, but moderate. But if I keep

eating

> or drinking once the pain starts up, it usually keeps escalating

and

> I am sure if I didn't stop it could get over the top. If I don't

> eat, it subsides and improves. Last time it took 6 days. From

> figuring what I feel and what I am experiencing, what triggers it

and

> when it resolves, I am convinced it is some process of eating that

is

> not working right. It could be more than one problem going on at

the

> same time.

>

> The test that came back abnormal was the stomach emptying test. I

had

> elevated LFTs after taking percocet that made me sick. There was

some

> mention of " possible " sprue being seen on an upper GI by one

doctor

> and another doctor said my test was normal. But I had a biopsy of

the

> small intestine last summer that showed negative for Celiac

Disease.

> I had a normal MRCP, and ultrasound.

>

> You can see why it is confusing. I don't know, do they have GI

docs

> that handle complex cases? I hate to think of starting over from

> scratch. You know what it is like to get a new appt with a new

> doctor. Especially if he is any good.

>

> Adam

>

>

>

>

>

>

>

>

> > Adam, I am sure you might have mentioned this before and I can't

> find it but have any of these doctors checked your amylase

levels?

> It sure sounds like you have pancreatitis secondary to all the

> manipulation of removing your gallbladder. If you don't know for

> sure I would check into this.

> >

> > Best Wishes,

> > Debra

> >

> >

[Guest guest]

Hi Adam,

I can identify with what you're experiencing lately. I have not been

able to eat normally for more than six months now, and have been on a

liquid only diet for the last two and a half months. I have constant

nausea, and intense epigastric pain when I try to eat. My liver

enzymes, pancreatic enzymes, and biopsies are mostly normal, but

gastric emptying studies and endoscopy show significant gastic

dysmotility. Motility drugs have not worked, even at maximum doses.

I recently switched from a GI specialist I've been seeing for a

decade, to a doc who specializes in gastroparesis and is familiar

with mito. My new doc is now exploring the idea of adrenal

insufficiency, or even intestinal migraine. Most likely, my poor

guts are just weak and underpowered like the rest of my muscles, due

to mito. It looks like I'll be on this road for a while longer

before we get to the bottom of this, and find a way for me to get

adequate nutrition again.

Where are you located? Is there a GI doc who specializes in

gastroparesis that you can consult?

Theresa

(Primary Carnitine Deficiency)

[Guest guest]

Hi Gillian,

No I haven't had that test yet, but they did say we are going to do

it. I think it is worth looking into, since grains are what I had

started back to eating after the gallbladder surgery and after a week

of eating grains, the pain started back up. But I had increased my

fat the day I started having pain too, so I have to look at both

sources of pain.

But again, I would be surprised if that was all of it. I think I

might have more than one thing going on. I definitely get pain from

foods that are not grain, and today I am even getting pain from

liquids alone.

I am going to have that blood work and will ask the doctor next

Wednesday to get it done.

Thanks for that idea...I had forgotten about it.

Adam

In , " gillianstumps " wrote:

>

> Did they do the antibody test for Coeliac ..my biopsy was negative

> but the IgG antibody for it were highly positive which gastro said

> is gluten intolerance causing IBS..have found sometimes the biopsy

> readings can vary according to who does them!!!

>

> Gillian

>

>

>

> -- In , " adamm4321 " wrote:

> > Hi Gililan and Debra,

> >

> > First of all, I have not gotten any subset of mito diagnosis at

> this

> > point. No, I haven't been given any steroids. Yes, I have been

> > told years ago by an alternative doctor I may have some adrenal

> > fatigue going on. I had one kidney removed in 2003 and they were

> > able to leave the adrenal gland so I still have two.

> >

> > As for my BP. The GI doc in the hospital suggested that it was

> low

> > from not eating and drinking enough. As a matter of fact, for a

> six

> > week period in the summer, before the gallbladder surgery, I was

> > having daily headaches that were pulsating and pounding and would

> > start off when I woke up in the morning. My pressure readings

> were

> > 130/90 every time they took it during this period. During my

> hospital

> > stay, it averaged around 90/60.

> >

> > I was just evaluated over the summer for dysautonomia, but since

> > during that period my pressure was high, they said I didn't have

> it.

> > I don't have any tachycardia. When I was in the ER yesterday it

> was

> > 112/72. Can you depend on the automatic blood pressure cuff?

> >

> > Yes, they checked my amylase and lipase. That is the confusing

> part,

> > with the sphincter of oddi condition it is usual to expect these

> > enzymes to be elevated and mine arent.

> >

> > The pain that I experience is most definitely triggered by

eating.

> It

> > has not been over the top pain, but moderate. But if I keep

> eating

> > or drinking once the pain starts up, it usually keeps escalating

> and

> > I am sure if I didn't stop it could get over the top. If I don't

> > eat, it subsides and improves. Last time it took 6 days. From

> > figuring what I feel and what I am experiencing, what triggers it

> and

> > when it resolves, I am convinced it is some process of eating

that

> is

> > not working right. It could be more than one problem going on at

> the

> > same time.

> >

> > The test that came back abnormal was the stomach emptying test. I

> had

> > elevated LFTs after taking percocet that made me sick. There was

> some

> > mention of " possible " sprue being seen on an upper GI by one

> doctor

> > and another doctor said my test was normal. But I had a biopsy of

> the

> > small intestine last summer that showed negative for Celiac

> Disease.

> > I had a normal MRCP, and ultrasound.

> >

> > You can see why it is confusing. I don't know, do they have GI

> docs

> > that handle complex cases? I hate to think of starting over from

> > scratch. You know what it is like to get a new appt with a new

> > doctor. Especially if he is any good.

> >

> > Adam

> >

> >

> >

> >

> >

> >

> >

> >

> > > Adam, I am sure you might have mentioned this before and I

can't

> > find it but have any of these doctors checked your amylase

> levels?

> > It sure sounds like you have pancreatitis secondary to all the

> > manipulation of removing your gallbladder. If you don't know for

> > sure I would check into this.

> > >

> > > Best Wishes,

> > > Debra

> > >

> > >

[Guest guest]

Hi Theresa,

I am sorry to hear that the motility drugs have not worked. That

would have been a nice simple solution. I tried the reglan for a few

days before I was back to liquids again. I was taking it with non

fat milk shakes. It seemed like it was helping for awhile, with

cramping after taking it, but then I wasn't getting cramping again,

so I am not enthused. But while taking it, I still managed to get

pain on my right side.

I am also seeing a GI doc that specializes in dysmotility and is

familiar with mito on this coming Wednesday. I am Boston Mass area

and have had this appt for 5 months. He has quite a schedule.

I didn't think a mainstream GI doc would persue an adrenal

insufficiency diagnosis. Interesting. I also take Synthroid every

day and my dose was lowered 5 months ago. My TSH was too high, then

it tested in normal range last week. Still is a little high.

I also have other hormones that have tested out too low and was

invited to be in a study for HRT because of that. But I never tried

it. It would be easier to think that could be effecting things than

to think it is just mito cells giving up.

How do you deal with constant nausea? At least I don't have that to

deal with. I don't know how you do it. What are you drinking that

is helping you? Do you have any sugar problems to deal with?

Adam

> Hi Adam,

>

> I can identify with what you're experiencing lately. I have not

been

> able to eat normally for more than six months now, and have been on

a

> liquid only diet for the last two and a half months. I have

constant

> nausea, and intense epigastric pain when I try to eat. My liver

> enzymes, pancreatic enzymes, and biopsies are mostly normal, but

> gastric emptying studies and endoscopy show significant gastic

> dysmotility. Motility drugs have not worked, even at maximum

doses.

>

> I recently switched from a GI specialist I've been seeing for a

> decade, to a doc who specializes in gastroparesis and is familiar

> with mito. My new doc is now exploring the idea of adrenal

> insufficiency, or even intestinal migraine. Most likely, my poor

> guts are just weak and underpowered like the rest of my muscles,

due

> to mito. It looks like I'll be on this road for a while longer

> before we get to the bottom of this, and find a way for me to get

> adequate nutrition again.

>

> Where are you located? Is there a GI doc who specializes in

> gastroparesis that you can consult?

>

> Theresa

> (Primary Carnitine Deficiency)

[Guest guest]

Hi Adam,

I guess I've gotten used to the constant nausea and pain the same way

as everything else. Ginger ale sometimes helps the nausea. So do

saltine crackers, but I can only eat a couple. Zelnorm, Reglan and

Prevacid (all three at the same time, at maximum dose)didn't make any

difference.

My biggest problem is getting enough nutrition. Because my problem

is in fatty acid metabolism, I maintain a very low fat diet anyway.

I live on gatorade, slimfast, skim milk and fat free broth. It's

really hard to get enough calories to maintain life, and my blood

sugar drops easily. I have to consume something frequently, even

though I don't want to. Even the slimfast is difficult to digest now.

I'm hopeful, as you are, that we find answers soon...and effective

treatments to go with them.

Theresa

> > Hi Adam,

> >

> > I can identify with what you're experiencing lately. I have not

> been

> > able to eat normally for more than six months now, and have been

on

> a

> > liquid only diet for the last two and a half months. I have

> constant

> > nausea, and intense epigastric pain when I try to eat. My liver

> > enzymes, pancreatic enzymes, and biopsies are mostly normal, but

> > gastric emptying studies and endoscopy show significant gastic

> > dysmotility. Motility drugs have not worked, even at maximum

> doses.

> >

> > I recently switched from a GI specialist I've been seeing for a

> > decade, to a doc who specializes in gastroparesis and is familiar

> > with mito. My new doc is now exploring the idea of adrenal

> > insufficiency, or even intestinal migraine. Most likely, my poor

> > guts are just weak and underpowered like the rest of my muscles,

> due

> > to mito. It looks like I'll be on this road for a while longer

> > before we get to the bottom of this, and find a way for me to get

> > adequate nutrition again.

> >

> > Where are you located? Is there a GI doc who specializes in

> > gastroparesis that you can consult?

> >

> > Theresa

> > (Primary Carnitine Deficiency)

[Guest guest]

Hi Alice,

Yes, I got the impression at the chat that there isn't always a lot

they can do for digestive problems. That was pretty discouraging.

But there is nothing you can do about what IS. I am at a point right

now, that I want to be sure I know what IS. I am not there yet. I

still feel the doctors are confusing and confused. It is not that

they are at a point where they are saying you HAVE this and there is

nothing we can do about it. They are saying we are still not sure we

know what it is. How that is possible with all the tests they are

able to do, I don't understand. They have taken detailed films of

every part of my anatomy. They took nuclear studies to see whether

bile was actually flowing from my liver into the intestine and it

was. They have done blood work. I don't think they have other tests

they can do aside from opening me up and getting a look. Or this ERCP

test that they are offering.

What is in the back of my mind is, I have had these " visual " tests of

the anatomy of the digestive tract a number of times. Nothing ever

LOOKS abnormal. But that doesn't mean it is actually functioning

normally. I had the Gastric emptying test which does measure the

emptying and the Hida Scan which supposedly shows the path the bile

takes when leaving the liver and if it can proceed into the

intestine. So those two tests test function. Unfortunately, they

can't test function of the pancreas. I asked them that. They said

there are too many secretions and too great a complexity of functions

for them to test the pancreas. I guess they can't test the function

of the liver either, beyond the measurement of about 6 blood tests.

They cannot measure if your liver is actually producing bile in

enough quantities.

In the end, it will probably come down to the fact that despite

tests, I may not know exactly what is wrong but only that it doesn't

work. If I get to that point, then I will have to deal with it.

Right now, I won't be satisfied until I have turned over every rock

to find out what is wrong with my digestive tract and whether there

is something that can be done or not.

I do understand that doctors cannot do something about every

problem. I couldn't have lived the past 25 years without

understanding that. [g] As a matter of fact, if I went by my own

experience, there is a lot fewer things they can do something about

than they think, and when they do figure out something to do, it

often makes things worse. So I am not expecting a lot, I am trying to

accept what is probably inevitable at the same time I am trying to

follow every avenue open to me to be sure nothing has been left

undone.

Thanks for reminding me not get my hopes up. Even in the face of a

pretty discouraging outlook, I have found your spirit refuses to let

go of every shred of hope until there is proof there is nothing to

hope for.

:-)

Adam

> Delayed Gastric Emptying is not uncommon either. As Dr Cohen said

to you in the chat on Monday - GI problems are some of the hardest

for the doctors to manage with a patient who is dealing with Mito. I

hope you can get some relief and soon. I know you are frustrated and

rightfully so. I get stressed with doctors who seem to shrug off the

problems rather than tell you they don't have any answers.

>

> Hang in there - as hard as it may be - and hopefully you'll get

beyond this and in the course of it, teach some doctors how to handle

issues that are not textbook.

>

> Alice

>

>