Scary New Symptoms Has Anyone Ever Had This Happen? Please Let Me Know ASAP

[Guest guest]

Hi Guys: Well, long time no write but what else is new. I've been

having an especially bad time of it for about the past month or so

with nearly constant pain, nausea, etc., etc. I talked to Pain

Doctor and he said the only things he could offer me were (a) more

Percocet. Mo, thank you makes me more nauseated and/or ( another

celiac Block.

I settled for the last one as I've decided that I don't get

wonderful relief right away from it that it is probably the one

single thing that has kept me out of the ER these past months. So,

short term relief: no Long Term Relief: Probably And since

over the past two wks or so I've come as close as I ever have since

the beginning to needing to go to ER that perhaps it was time for

another block. Last one I had was back in February....was sick for

three wks afterwards and I think that is what put me off about

getting another one.

At any rate I need help with yet another weird symptom and I'm

consulting you guys first before I call the doctor tomorrow. For

the past month the heating pad (my best friend for the past year)

has become increasingly less and less useful to me. The reason

being is at this weird new symptom I'm getting is this EXTREME

burning sensation from mid sternum area around ribs on right side

mostly and then (prior to the block at least) traveling all the way

up into my shoulder blades. It literally feels like someone is

pouring some sort of acid on my internal organs...and I am NOT

joking!! So....got the old fashioned water bottle and put it in the

freezer and then put that on my tummy and I almost feel like I'm

going to see steam rising...it is THAT bad.

Anyway, has anyone else experienced this? If so, please let me know

what it is and how it needs to be treated. This is a very odd and

kind of scary symptom. This, in addition, to the awful edema in my

feet, ankles and calves is making it difficult to walk at times.

The diuretic the doctor prescribed are proving to be VERY use-LESS.

I'll ask him about another tomorrow when I call.

Sorry for the length of this...but please if anyone knows what this

awful burning is I need to know ASAP. It is just awful....

Thanks

[Guest guest]

,

I get the same thing. Have for years. I read that this is due to damaged

nerves. The nerves are damaged from chronic pain over a long period of time.

I have had this for about five years. It feels like someone pours battery

acid inside your gut. Not a good feeling at all.

Have you tried Demerol? What is this with your doc? Perhaps you should find

someone who understands and trusts you and treats you like a human being.

That is a lot of nonsense. The fact that anyone with that excruciating pain

should sit around with a water bottle or a heating pad is disgusting and

WRONG. BTW, you should stop taking that Percocet before you lose your liver,

too. I have a friend who now can't walk because of three nerve blocks. My

pain doc told me to forget nerve blocks because A) they don't work most of

the time and when they do work they are only temporary.

All the Best,

Jerry

***********************************

>

> Hi Guys: Well, long time no write but what else is new. I've been

> having an especially bad time of it for about the past month or so

> with nearly constant pain, nausea, etc., etc. I talked to Pain

> Doctor and he said the only things he could offer me were (a) more

> Percocet. Mo, thank you makes me more nauseated and/or ( another

> celiac Block.

>

> I settled for the last one as I've decided that I don't get

> wonderful relief right away from it that it is probably the one

> single thing that has kept me out of the ER these past months. So,

> short term relief: no Long Term Relief: Probably And since

> over the past two wks or so I've come as close as I ever have since

> the beginning to needing to go to ER that perhaps it was time for

> another block. Last one I had was back in February....was sick for

> three wks afterwards and I think that is what put me off about

> getting another one.

>

> At any rate I need help with yet another weird symptom and I'm

> consulting you guys first before I call the doctor tomorrow. For

> the past month the heating pad (my best friend for the past year)

> has become increasingly less and less useful to me. The reason

> being is at this weird new symptom I'm getting is this EXTREME

> burning sensation from mid sternum area around ribs on right side

> mostly and then (prior to the block at least) traveling all the way

> up into my shoulder blades. It literally feels like someone is

> pouring some sort of acid on my internal organs...and I am NOT

> joking!! So....got the old fashioned water bottle and put it in the

> freezer and then put that on my tummy and I almost feel like I'm

> going to see steam rising...it is THAT bad.

>

> Anyway, has anyone else experienced this? If so, please let me know

> what it is and how it needs to be treated. This is a very odd and

> kind of scary symptom. This, in addition, to the awful edema in my

> feet, ankles and calves is making it difficult to walk at times.

> The diuretic the doctor prescribed are proving to be VERY use-LESS.

> I'll ask him about another tomorrow when I call.

>

> Sorry for the length of this...but please if anyone knows what this

> awful burning is I need to know ASAP. It is just awful....

>

> Thanks

>

>

[Guest guest]

Jerry: Thanks for your quick response I truly appreciate it! The

problem is that I'm in between GI docs right now. The one I was

seeing sent me to Boston, MA to a supposedly well reknowned doctor

that is affiliated with Harvard University. He took one (literally

ONE!!) look at me, sort of skimmed over my file, etc., and made the

proclamation right then and there that I did NOT have cp. He made

this decision based on NOTHING....no tests, nothing!! The problem is

that since he is affiliated with Harvard University no less, the

docs that I see sort of " kow tow " to his " much esteemed judgment "

and are almost afraid to veer off in any other direction other than

muttering under his breath last time I was there that perhaps I had

what is known as small duct disease, perhaps I should consult a

surgeon, and perhaps I should just learn to live with it!!

Yes, as you guessed it I have NOT been back to that doctor and will

NEVER go back to him. The problem I'm having now is that I

basically have NO GI doc and I've only got my pain management doc

and my primary care guy to work with. Pain doc is fairly well

receptive to some of the things that I have mentioned but he can

only deal with the pain treatment of it, etc. Sooo...I really need

to find not just a GI but a pancreatologist.

At any rate, interesting about the nerve damage thing. Should I

also consult a neurologist? I'm just worried that it's not nerve

damage but due to backup of pancreatic enzsymes. Is there any way

of differentiating that sort of thing?

thanks again and hope you're doing well this evening

> >

> > Hi Guys: Well, long time no write but what else is new. I've been

> > having an especially bad time of it for about the past month or

so

> > with nearly constant pain, nausea, etc., etc. I talked to Pain

> > Doctor and he said the only things he could offer me were (a)

more

> > Percocet. Mo, thank you makes me more nauseated and/or (

another

> > celiac Block.

> >

> > I settled for the last one as I've decided that I don't get

> > wonderful relief right away from it that it is probably the one

> > single thing that has kept me out of the ER these past months.

So,

> > short term relief: no Long Term Relief: Probably And since

> > over the past two wks or so I've come as close as I ever have

since

> > the beginning to needing to go to ER that perhaps it was time for

> > another block. Last one I had was back in February....was sick

for

> > three wks afterwards and I think that is what put me off about

> > getting another one.

> >

> > At any rate I need help with yet another weird symptom and I'm

> > consulting you guys first before I call the doctor tomorrow. For

> > the past month the heating pad (my best friend for the past year)

> > has become increasingly less and less useful to me. The reason

> > being is at this weird new symptom I'm getting is this EXTREME

> > burning sensation from mid sternum area around ribs on right side

> > mostly and then (prior to the block at least) traveling all the

way

> > up into my shoulder blades. It literally feels like someone is

> > pouring some sort of acid on my internal organs...and I am NOT

> > joking!! So....got the old fashioned water bottle and put it in

the

> > freezer and then put that on my tummy and I almost feel like I'm

> > going to see steam rising...it is THAT bad.

> >

> > Anyway, has anyone else experienced this? If so, please let me

know

> > what it is and how it needs to be treated. This is a very odd and

> > kind of scary symptom. This, in addition, to the awful edema in

my

> > feet, ankles and calves is making it difficult to walk at times.

> > The diuretic the doctor prescribed are proving to be VERY use-

LESS.

> > I'll ask him about another tomorrow when I call.

> >

> > Sorry for the length of this...but please if anyone knows what

this

> > awful burning is I need to know ASAP. It is just awful....

> >

> > Thanks

> >

> >

>

>

>

[Guest guest]

Hi ,

I noticed you said you were told you have small duct disease. I was told the

same thing. What I am wondering is why in the heck your GI doc would say you

have small duct disease then turn around & say you don't even have cp ???? That

makes no sense.

K.

she_remembers wrote:

Jerry: Thanks for your quick response I truly appreciate it! The

problem is that I'm in between GI docs right now. The one I was

seeing sent me to Boston, MA to a supposedly well reknowned doctor

that is affiliated with Harvard University. He took one (literally

ONE!!) look at me, sort of skimmed over my file, etc., and made the

proclamation right then and there that I did NOT have cp. He made

this decision based on NOTHING....no tests, nothing!! The problem is

that since he is affiliated with Harvard University no less, the

docs that I see sort of " kow tow " to his " much esteemed judgment "

and are almost afraid to veer off in any other direction other than

muttering under his breath last time I was there that perhaps I had

what is known as small duct disease, perhaps I should consult a

surgeon, and perhaps I should just learn to live with it!!

Yes, as you guessed it I have NOT been back to that doctor and will

NEVER go back to him. The problem I'm having now is that I

basically have NO GI doc and I've only got my pain management doc

and my primary care guy to work with. Pain doc is fairly well

receptive to some of the things that I have mentioned but he can

only deal with the pain treatment of it, etc. Sooo...I really need

to find not just a GI but a pancreatologist.

At any rate, interesting about the nerve damage thing. Should I

also consult a neurologist? I'm just worried that it's not nerve

damage but due to backup of pancreatic enzsymes. Is there any way

of differentiating that sort of thing?

thanks again and hope you're doing well this evening

> >

> > Hi Guys: Well, long time no write but what else is new. I've been

> > having an especially bad time of it for about the past month or

so

> > with nearly constant pain, nausea, etc., etc. I talked to Pain

> > Doctor and he said the only things he could offer me were (a)

more

> > Percocet. Mo, thank you makes me more nauseated and/or (

another

> > celiac Block.

> >

> > I settled for the last one as I've decided that I don't get

> > wonderful relief right away from it that it is probably the one

> > single thing that has kept me out of the ER these past months.

So,

> > short term relief: no Long Term Relief: Probably And since

> > over the past two wks or so I've come as close as I ever have

since

> > the beginning to needing to go to ER that perhaps it was time for

> > another block. Last one I had was back in February....was sick

for

> > three wks afterwards and I think that is what put me off about

> > getting another one.

> >

> > At any rate I need help with yet another weird symptom and I'm

> > consulting you guys first before I call the doctor tomorrow. For

> > the past month the heating pad (my best friend for the past year)

> > has become increasingly less and less useful to me. The reason

> > being is at this weird new symptom I'm getting is this EXTREME

> > burning sensation from mid sternum area around ribs on right side

> > mostly and then (prior to the block at least) traveling all the

way

> > up into my shoulder blades. It literally feels like someone is

> > pouring some sort of acid on my internal organs...and I am NOT

> > joking!! So....got the old fashioned water bottle and put it in

the

> > freezer and then put that on my tummy and I almost feel like I'm

> > going to see steam rising...it is THAT bad.

> >

> > Anyway, has anyone else experienced this? If so, please let me

know

> > what it is and how it needs to be treated. This is a very odd and

> > kind of scary symptom. This, in addition, to the awful edema in

my

> > feet, ankles and calves is making it difficult to walk at times.

> > The diuretic the doctor prescribed are proving to be VERY use-

LESS.

> > I'll ask him about another tomorrow when I call.

> >

> > Sorry for the length of this...but please if anyone knows what

this

> > awful burning is I need to know ASAP. It is just awful....

> >

> > Thanks

> >

> >

>

>

>

[Guest guest]

,

I have a friend who is DJ and I helped with a gig in rural North Carolina

last night. I was in a barn. We were there for eight hours. I am paying for

it today.

Yeah, it's nerve damage. I used to worry that the burning was due to enzymes

escaping my pancreas and dissolving my internal organs. Actually, it was

doing that for awhile. My Sphincter of Oddi was fused closed and the

pressure in the pancreatic ducts blew a hole in the back of my pancreas.

Pancreatic fluid was eating away the arteries and veins leading to my

spleen. A little while longer and I would have bled to death internally.

I don't think you need to see a neurologist. Any one else have any ideas on

that?

I can't diagnose you because I'm not a doctor. So you have to take what I

say with a grain of salt. I think it is imperative for you to find a

physician immediately. This crap about going for a month without pain meds

is nonsense in my opinion. It is also brutal and senseless. Pain does not

make us more honorable.

I can set you up with my doctor who is outstanding, but he is in NC and you

would have to fly or drive down here to see him. He teaches pancreatic

diseases in the med school at UNC. He also trains fellow and residents. He

has a new pancreas fellow with him every year. He is the best doctor I have

ever seen in my life. Absolutely the best. If I were you (and I'm not of

course) I would take advantage of my offer and come to see this guy. I am

sure he could set you up with someone locally after you see him. If you

want, I can ask him to recommend someone in your area. Where are you

located? But, still, if I were you, I'd come down here and see him.

Like everyone else in this group, I waited too long to find a good doctor

who could diagnose and treat me. It almost cost me my life. It's not out

fault or yours. This disease is poorly known and generally misunderstood.

Please fire your pain doctor. He (she) is an idiot and is hurting you by

making you endure this excruciating pain. Go find someone who can help.

Please understand that I know what I am asking you to do. Almost all of us

here had to do this early in the progression of our disease. The chances of

bumping into someone who knows how to treat pancreatitis is infinitesimal.

Please let me know what you want me to do.

Best Regards,

Jerry/NC

************************************

>

> Jerry: Thanks for your quick response I truly appreciate it! The

> problem is that I'm in between GI docs right now. The one I was

> seeing sent me to Boston, MA to a supposedly well reknowned doctor

> that is affiliated with Harvard University. He took one (literally

> ONE!!) look at me, sort of skimmed over my file, etc., and made the

> proclamation right then and there that I did NOT have cp. He made

> this decision based on NOTHING....no tests, nothing!! The problem is

> that since he is affiliated with Harvard University no less, the

> docs that I see sort of " kow tow " to his " much esteemed judgment "

> and are almost afraid to veer off in any other direction other than

> muttering under his breath last time I was there that perhaps I had

> what is known as small duct disease, perhaps I should consult a

> surgeon, and perhaps I should just learn to live with it!!

>

> Yes, as you guessed it I have NOT been back to that doctor and will

> NEVER go back to him. The problem I'm having now is that I

> basically have NO GI doc and I've only got my pain management doc

> and my primary care guy to work with. Pain doc is fairly well

> receptive to some of the things that I have mentioned but he can

> only deal with the pain treatment of it, etc. Sooo...I really need

> to find not just a GI but a pancreatologist.

>

> At any rate, interesting about the nerve damage thing. Should I

> also consult a neurologist? I'm just worried that it's not nerve

> damage but due to backup of pancreatic enzsymes. Is there any way

> of differentiating that sort of thing?

>

> thanks again and hope you're doing well this evening

>

>

>