To Jerry: Re: Scary New Symptoms Has Anyone Ever Had This Happen?

[Guest guest]

Hi Jerry: Thanks so much for your reply. Now I'm really getting

concerned about this seemingly new change in symptoms. My oldest

son, Colin lives in Charlotte so if need be I could stay with him

possibly although I think I'd somewhat be intruding because as he

and his fiance are saving for a down payment on a house they are

currently staying with his fiance's brother and wife. They seem

like really good people though and I'm sure if I asked him to he

could do some sort of finagling and arrange for a short visit. How

far away is your doctor from Charlotte? And if that doesn't pan out

or even if it does (because I'd obviously have to return home here

to RI) maybe your doctor could also recommend someone in my area. I

would very much appreciate it if you could look into that for the

short term and a possible visit with your doc in the near term.

Thanks again Jerry and please let me know...

> >

> > 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

> >

> >

> >

>

>

>

[Guest guest]

HI ,

Ok I'll get in touch with him and see what I can do. He is not near

Charlotte, he is in Chapel Hill which is near Raleigh. Charlotte is about a

three hour drive from up here. He is at UNC Chapel Hill. You know, you can

fly in and fly out on the same day, unless he wants to do tests. You fly

into Raleigh, which is RDU airport. I'll see what he has open for

appointments and get back to you later today. Is that how you want to

proceed? His secretary's name is Patty Prentice and she is a gem.

Jerry

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

>

> Hi Jerry: Thanks so much for your reply. Now I'm really getting

> concerned about this seemingly new change in symptoms. My oldest

> son, Colin lives in Charlotte so if need be I could stay with him

> possibly although I think I'd somewhat be intruding because as he

> and his fiance are saving for a down payment on a house they are

> currently staying with his fiance's brother and wife. They seem

> like really good people though and I'm sure if I asked him to he

> could do some sort of finagling and arrange for a short visit. How

> far away is your doctor from Charlotte? And if that doesn't pan out

> or even if it does (because I'd obviously have to return home here

> to RI) maybe your doctor could also recommend someone in my area. I

> would very much appreciate it if you could look into that for the

> short term and a possible visit with your doc in the near term.

> Thanks again Jerry and please let me know...

>

>

>

> > ,

> >

> > 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

>

[Guest guest]

, I am very, very sick today. The pain is just excruciating. If I don't

get to the doc today, that's why. But I haven't forgotten about you. Sorry

for the delay.

Jerry

>

> HI ,

>

> Ok I'll get in touch with him and see what I can do. He is not near

> Charlotte, he is in Chapel Hill which is near Raleigh. Charlotte is about a

> three hour drive from up here. He is at UNC Chapel Hill. You know, you can

> fly in and fly out on the same day, unless he wants to do tests. You fly

> into Raleigh, which is RDU airport. I'll see what he has open for

> appointments and get back to you later today. Is that how you want to

> proceed? His secretary's name is Patty Prentice and she is a gem.

>

> Jerry

> ***********************************

>

>

> >

> > Hi Jerry: Thanks so much for your reply. Now I'm really getting

> > concerned about this seemingly new change in symptoms. My oldest

> > son, Colin lives in Charlotte so if need be I could stay with him

> > possibly although I think I'd somewhat be intruding because as he

> > and his fiance are saving for a down payment on a house they are

> > currently staying with his fiance's brother and wife. They seem

> > like really good people though and I'm sure if I asked him to he

> > could do some sort of finagling and arrange for a short visit. How

> > far away is your doctor from Charlotte? And if that doesn't pan out

> > or even if it does (because I'd obviously have to return home here

> > to RI) maybe your doctor could also recommend someone in my area. I

> > would very much appreciate it if you could look into that for the

> > short term and a possible visit with your doc in the near term.

> > Thanks again Jerry and please let me know...

> >

> >

> >

> > > ,

> > >

> > > 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

> >

>

>