Trouble with SSD and now diagnosis ?

[Guest guest]

We were trying to figure out the next step for SSD because was

denied. He is very depressed about this. To top things off, today

he was told by another GI pancreas doctor that she doesn't think he

has CP at all. I have e-mailed back and forth several times tonight

and her apparent reasoning for this is people with CP was take

narcotics get better and doesn't get better. I am not kidding

that is what she said. She wants to do an ERCP herself to make sure.

Then his regular doctor said you can go ahead and take the

antioxidants. I did some reading and they are okay. They won't do

anything for your pain, but they may slow down the disease process.

Now wait a minute guys, this is where I began to get agitated real

fast and started by letter writing. I am making progress. She

doesn't know anything and basically is admitting it. We are back

where we were a year ago and his mood is in the pits. Once again,

thanks for listening to me. I feel like I am chatting with a bunch

of friends, but I never have much to offer. Please be aware that I

pray for all of you all the time and worry when you're not here and

think about you lots. Have a good weekend.

[Guest guest]

..... I am truly pissed about this......Tell the Dr to get Bent.,..I

have had those Dr before tell me the same thing.....I have a Dr come in who

had never even looked at my medical records and tell me that I don't have

pancreatitis.....I said.....oh really.....and what do I have......she

says..I think you have hepatitis....I said...really.....that is

interesting...so these 3 surgeries that I have had because of my liter size

psuedocyst were for nothing and then I got really nasty.....You are an idiot

and I will never see you again......period......People like that just piss

me off.....and by the way she looked at my records and went...oh I see that

you have been tested for hep and that you tested positive......what an

idiot......Here is the deal......you are the boss period...you pay their

salaries.......You tell them what the deal is and how you want to

proceed.....Have they done a CT? What is the purpose of the ERCP? How are

his enzyme levels?

She is an idiot if she thinks.....oh well you take pain meds and you get

better from it....I would find a new Dr right away...I would also make a

research paper out of all the data you can find about pancreatitis and hand

it to her......Hell send her to my website, maybe she will learn something

and come out of the stone age.

As far as the antioxidants are concerned...directly they don't stop pain

from happening.....what they do though is to make it so that you have pain

less over a period of time..so indirectly...they help your pain.....Is Chris

taking enzymes? Enzymes will help with pain also by making it so the

pancreas doesn't have to work so hard

Most Dr don't know a thing about pancreatitis.....It is sad but true, we

have to educate them on pancreatitis and don't back down...you tell them the

way it is or you tell them that you will move on period.....If I can help

with anything else, please let me know...sorry it took me so long to

respond.....this cold thing has gotten me down.

I hope this finds you and yours well

Mark

Trouble with SSD and now diagnosis ?

> We were trying to figure out the next step for SSD because was

> denied. He is very depressed about this. To top things off, today

> he was told by another GI pancreas doctor that she doesn't think he

> has CP at all. I have e-mailed back and forth several times tonight

> and her apparent reasoning for this is people with CP was take

> narcotics get better and doesn't get better. I am not kidding

> that is what she said. She wants to do an ERCP herself to make sure.

> Then his regular doctor said you can go ahead and take the

> antioxidants. I did some reading and they are okay. They won't do

> anything for your pain, but they may slow down the disease process.

> Now wait a minute guys, this is where I began to get agitated real

> fast and started by letter writing. I am making progress. She

> doesn't know anything and basically is admitting it. We are back

> where we were a year ago and his mood is in the pits. Once again,

> thanks for listening to me. I feel like I am chatting with a bunch

> of friends, but I never have much to offer. Please be aware that I

> pray for all of you all the time and worry when you're not here and

> think about you lots. Have a good weekend.

>

>

>

>

>

>

>

>

>

[Guest guest]

Amen, Mark. That is the way it is.

Jerry/NC

*********************************8

>

> ..... I am truly pissed about this......Tell the Dr to get Bent.,..I

> have had those Dr before tell me the same thing.....I have a Dr come in

> who

> had never even looked at my medical records and tell me that I don't have

> pancreatitis.....I said.....oh really.....and what do I have......she

> says..I think you have hepatitis....I said...really.....that is

> interesting...so these 3 surgeries that I have had because of my liter

> size

> psuedocyst were for nothing and then I got really nasty.....You are an

> idiot

> and I will never see you again......period......People like that just piss

> me off.....and by the way she looked at my records and went...oh I see

> that

> you have been tested for hep and that you tested positive......what an

> idiot......Here is the deal......you are the boss period...you pay their

> salaries.......You tell them what the deal is and how you want to

> proceed.....Have they done a CT? What is the purpose of the ERCP? How are

> his enzyme levels?

>

> She is an idiot if she thinks.....oh well you take pain meds and you get

> better from it....I would find a new Dr right away...I would also make a

> research paper out of all the data you can find about pancreatitis and

> hand

> it to her......Hell send her to my website, maybe she will learn something

> and come out of the stone age.

>

> As far as the antioxidants are concerned...directly they don't stop pain

> from happening.....what they do though is to make it so that you have pain

> less over a period of time..so indirectly...they help your pain.....Is

> Chris

> taking enzymes? Enzymes will help with pain also by making it so the

> pancreas doesn't have to work so hard

>

> Most Dr don't know a thing about pancreatitis.....It is sad but true, we

> have to educate them on pancreatitis and don't back down...you tell them

> the

> way it is or you tell them that you will move on period.....If I can help

> with anything else, please let me know...sorry it took me so long to

> respond.....this cold thing has gotten me down.

>

> I hope this finds you and yours well

>

> Mark

>

[Guest guest]

and I messed up on my story though.I was so pissed at the time.....it was I

see you tested negative for hep

Re: Trouble with SSD and now diagnosis ?

> Amen, Mark. That is the way it is.

>

> Jerry/NC

> *********************************8

>

>

>>

>> ..... I am truly pissed about this......Tell the Dr to get Bent.,..I

>> have had those Dr before tell me the same thing.....I have a Dr come in

>> who

>> had never even looked at my medical records and tell me that I don't have

>> pancreatitis.....I said.....oh really.....and what do I have......she

>> says..I think you have hepatitis....I said...really.....that is

>> interesting...so these 3 surgeries that I have had because of my liter

>> size

>> psuedocyst were for nothing and then I got really nasty.....You are an

>> idiot

>> and I will never see you again......period......People like that just

>> piss

>> me off.....and by the way she looked at my records and went...oh I see

>> that

>> you have been tested for hep and that you tested positive......what an

>> idiot......Here is the deal......you are the boss period...you pay their

>> salaries.......You tell them what the deal is and how you want to

>> proceed.....Have they done a CT? What is the purpose of the ERCP? How are

>> his enzyme levels?

>>

>> She is an idiot if she thinks.....oh well you take pain meds and you get

>> better from it....I would find a new Dr right away...I would also make a

>> research paper out of all the data you can find about pancreatitis and

>> hand

>> it to her......Hell send her to my website, maybe she will learn

>> something

>> and come out of the stone age.

>>

>> As far as the antioxidants are concerned...directly they don't stop pain

>> from happening.....what they do though is to make it so that you have

>> pain

>> less over a period of time..so indirectly...they help your pain.....Is

>> Chris

>> taking enzymes? Enzymes will help with pain also by making it so the

>> pancreas doesn't have to work so hard

>>

>> Most Dr don't know a thing about pancreatitis.....It is sad but true, we

>> have to educate them on pancreatitis and don't back down...you tell them

>> the

>> way it is or you tell them that you will move on period.....If I can help

>> with anything else, please let me know...sorry it took me so long to

>> respond.....this cold thing has gotten me down.

>>

>> I hope this finds you and yours well

>>

>> Mark

>>

>

>

>

[Guest guest]

Yes - it certainly seems that there are a lot of doctors ignorant

about the disease who profess to be " specialists " Makes me soooo

mad!!! Can't give up the fight though. They are baby stepping around

me now - responding immediately to messages and calls - it's like she

knows she screwed up so bad and is just waiting for someone to get

her!!

- In pancreatitis , Jerry Pople <jmpople@g...> wrote:

>

> Amen, Mark. That is the way it is.

>

> Jerry/NC

>

[Guest guest]

: I TOTALLY agree with what Mark has said here. I can't offer

anything else up except to say that I am STILL (!!!) after 2 yrs of

dealing with this - looking for a good doctor. What I need to find

is a doctor that is a pancreatologist and also perhaps a woman as

I've found (usually) that women doctors when dealing with their

woman patients are a bit more empathetic since their bodies are

similar and they understand a bit better about " woman specific "

complaints. I believe you're talking about your husband here though

am I correct? This is just so awful....the treatment that we get.

I had a supposedly world reknowned physician that I was referred to

by my recent GI doc (that I'm about ready to fire as I called to

tell him about some strange new symptoms that I've been having THREE

WEEKS AGO and I still haven't heard back!!! and both my husband and

me have been calling and calling and calling to no avail) tell me

that I didn't have cp. He is a doctor that is affiliated with

Harvard University in Boston, MA. We drove up there, he never

examined me, never ran tests on me, never even so much as palpated

my abdomen and then made the proclamation that I don't have chronic

pancreatitis. Well, then he must be a psychic!! This just angers

me so much...the treatment that we have to endure during the worst

most confusing times of our lives for most of us.

What you DO you have here though is a wonderful group of people and

you will learn more here than you will anywhere else. My PCP (who

I'm also thinking about getting rid of for various reasons one of

which is the following comment he made when I told him about this

group!) " Oh, so I see you're on the INTERNET (said really

sarcastically)....well, don't believe everything you read on the

INTERNET. " Well, no kidding doc...I think I could probably weed out

the BS on my own you know. I don't need you to tell me that....

, if you ever need someone to talk to I am here for you ok? I,

too, was turned down on both my initial submittal and my appeal for

SSDI. Fortunately, I was a government employee for 18 yrs and I've

been approved on appeal for the federal employee's disability

retirement..but I still need to re-appeal the SSDI thing. What

helped turn over the decision on the federal one though I think is

that (a) I retained an attorney (you might want to consider that as

they don't usually take a fee unless successful, and ( I got a

long paper written up by a doctor that performed what they call a

Functional Capacity Test. Which isn't a test at all but a long

series of questions that they ask you and then they base their

opinion on whether or not they think you can work on how you answer

those questions.

Try to do both of these if you can...because while it didn't help me

with SSDI (I also don't show the usual " signs " and symptoms of

pancreatitis, in other words, the only way I got a diagnosis at all

was to have an ERCP done where the doc found high pressure at the

sphincter of oddi and the common bile duct and performed a dual

sphincterotomy. He told me that I have SOD and early cp...but bear

in mind also with a grain of salt that the doc in Boston that I

later saw claims to know the doc that did the ERCP (Dr. Glen Lehman

at the University of Indiana Medical Center/Hospital) both

professionally and personally. And yet, he STILL said he didn't

think I had pancreatitis. So go figure...

Also, not to bag on this doctor but to bag on this doctor (LOL!!)

there have been several other people on this very list that have

been told they didn't have cp and one time the person was in an

acute attack while they had their office visit with this doctor, was

told they didn't have cp and then subseqently ended up in the

hospital for THREE WEEKS in a full blown attack!!!

If there is anything I can do to help please ask ok? I might have

some stuff that you could ask your doctor to answer (it's kind of

like a questionaire thing) because if he is/was like my PCP he

wouldn't write (as he called it) a narrative but he DID fill out the

questionaire. It's actually from the SSDI site I believe (someone

else sent it to me) and it was written for people with fibromyalgia

but I just changed some of the wording around to make it fit with cp.

Hang in there and please let me know if I can help in any way. I'd

be happy to...

Best wishes to you and your family

[Guest guest]

All the info I just sent can be found at

http://www.top5plus5.com/Pancreas/SOCIAL%20SECURITY/SOCIAL%20SECURITY.htm

Hope everyone finds it useful and I hope this finds you and yours

well......Mark

Re: Trouble with SSD and now diagnosis ?

> : I TOTALLY agree with what Mark has said here. I can't offer

> anything else up except to say that I am STILL (!!!) after 2 yrs of

> dealing with this - looking for a good doctor. What I need to find

> is a doctor that is a pancreatologist and also perhaps a woman as

> I've found (usually) that women doctors when dealing with their

> woman patients are a bit more empathetic since their bodies are

> similar and they understand a bit better about " woman specific "

> complaints. I believe you're talking about your husband here though

> am I correct? This is just so awful....the treatment that we get.

>

> I had a supposedly world reknowned physician that I was referred to

> by my recent GI doc (that I'm about ready to fire as I called to

> tell him about some strange new symptoms that I've been having THREE

> WEEKS AGO and I still haven't heard back!!! and both my husband and

> me have been calling and calling and calling to no avail) tell me

> that I didn't have cp. He is a doctor that is affiliated with

> Harvard University in Boston, MA. We drove up there, he never

> examined me, never ran tests on me, never even so much as palpated

> my abdomen and then made the proclamation that I don't have chronic

> pancreatitis. Well, then he must be a psychic!! This just angers

> me so much...the treatment that we have to endure during the worst

> most confusing times of our lives for most of us.

>

> What you DO you have here though is a wonderful group of people and

> you will learn more here than you will anywhere else. My PCP (who

> I'm also thinking about getting rid of for various reasons one of

> which is the following comment he made when I told him about this

> group!) " Oh, so I see you're on the INTERNET (said really

> sarcastically)....well, don't believe everything you read on the

> INTERNET. " Well, no kidding doc...I think I could probably weed out

> the BS on my own you know. I don't need you to tell me that....

>

> , if you ever need someone to talk to I am here for you ok? I,

> too, was turned down on both my initial submittal and my appeal for

> SSDI. Fortunately, I was a government employee for 18 yrs and I've

> been approved on appeal for the federal employee's disability

> retirement..but I still need to re-appeal the SSDI thing. What

> helped turn over the decision on the federal one though I think is

> that (a) I retained an attorney (you might want to consider that as

> they don't usually take a fee unless successful, and ( I got a

> long paper written up by a doctor that performed what they call a

> Functional Capacity Test. Which isn't a test at all but a long

> series of questions that they ask you and then they base their

> opinion on whether or not they think you can work on how you answer

> those questions.

>

> Try to do both of these if you can...because while it didn't help me

> with SSDI (I also don't show the usual " signs " and symptoms of

> pancreatitis, in other words, the only way I got a diagnosis at all

> was to have an ERCP done where the doc found high pressure at the

> sphincter of oddi and the common bile duct and performed a dual

> sphincterotomy. He told me that I have SOD and early cp...but bear

> in mind also with a grain of salt that the doc in Boston that I

> later saw claims to know the doc that did the ERCP (Dr. Glen Lehman

> at the University of Indiana Medical Center/Hospital) both

> professionally and personally. And yet, he STILL said he didn't

> think I had pancreatitis. So go figure...

>

> Also, not to bag on this doctor but to bag on this doctor (LOL!!)

> there have been several other people on this very list that have

> been told they didn't have cp and one time the person was in an

> acute attack while they had their office visit with this doctor, was

> told they didn't have cp and then subseqently ended up in the

> hospital for THREE WEEKS in a full blown attack!!!

>

> If there is anything I can do to help please ask ok? I might have

> some stuff that you could ask your doctor to answer (it's kind of

> like a questionaire thing) because if he is/was like my PCP he

> wouldn't write (as he called it) a narrative but he DID fill out the

> questionaire. It's actually from the SSDI site I believe (someone

> else sent it to me) and it was written for people with fibromyalgia

> but I just changed some of the wording around to make it fit with cp.

> Hang in there and please let me know if I can help in any way. I'd

> be happy to...

>

> Best wishes to you and your family

>

>

>

>

>

>

>

>

>

>

>

>