ventng: this really burns my butt

[Guest guest]

I need a listening ear while I ramble, please.

I was first told that I have HEDS, which is certainly very true. Then Dr.

Francomano, after doing a very extensive examination of me, sent me a VERY

detailed summary which said

that I also had CEDS. I know it is possible to have more than one EDS type, but

until then, I didn't realize I was one of them. It does make sense. I also

have numerous vascular components and lots of autonomic nervous system

dysfunctions, as well as chronic muskoskeletal pain and muscle spasms. That and

my eyes and orthopedic issues all have to be dealt with

medically/symptomatically/and separately....by various and sundry specialists.

When I fainted in Dec. (due to bp drop, secondary to POTS, secondary to EDS,

etc.) and hit my head HARD (didn't completely knock me out, but definitely

altered my level of consciousness and caused injuries, I was taken by ambulance

to my local ER (tiny hospital, small town, few drs, NONE in ER who know beans

about anything complicated. If there is very much wrong with a person, they are

care flighted to Dallas to a larger facility. The ER people had NO CLUE what was

wrong with me or what caused me to fall. I discovered last Friday that it was

mentioned in my progress notes (which I obtained a copy of for my own records)

that I was taking numerous Rx's from " many prescribers " . DUH!!!!!! Stands to

reason. Yes. I go to " many " specialists for each individual medical problem,

and most have " many " Rx's to treat each condition (IBS, POTS, arthritic, etc.

etc. etc.) DUH!!!! I do not, nor have I ever at any time, abused or misused ANY

medication, Rx or otherwise. In fact, I cannot take opiates at all for pain

control, as they send my IBS off the scale. My

ortho recently said, " for all that is wrong with you, you really don't take that

much daily medication and your dosages are relatively low all things

considered. " Not one single dr. among the MANY specialists I regularly see have

ever so much as hinted either verbally or in their progress notes that they felt

I did not need any/some of the meds which have been prescribed for various

things. On the contrary. All have said that they can see the reasons for each

one, and that I obviously need them. To quote Dr. Heffez, neurosurgeon, " Your

regimen of daily medications was obviously not arrived at quickly, and I would

be very hesitant to alter it in any way. " Sorry for venting, but it really

burned me up to have anything even remotely negative or that even remotely

suggested by thinly veiled implication that I was some kind of " druggie " or

something. That has NEVER

happened to me before, and I have had to take myself AND my two teenage EDSer

sons (with multiple medical problems--serious ones--including POTS, seizures,

etc.) to that ER and hospital MANY times over the years. This type of negative

comment in my medical records has NEVER happened before (and I know, because I

make a regular habit of getting current copies to share with any and all drs.

who see us--I don't want ANY dr. who treats me

or my sons to be unaware of what any other dr. has done or treated us for). I

was not only astounded, but also livid. They didn't know why I passed out and

hit my head. That's the long and short of it. They didn't even come CLOSE to

putting the correct term for POTS (Post Orthostatic Tachycardia Syndrome)

correctly noted nor spelled. Incidentally, these are the same

" medical marvels " who, when the EMT's were called to my son's school back in

Oct. when he collapsed due to both a tonic clonic seizure and convulsive

syncope...asked the school RN " What is Post Orthostatic Tachycardia

Syndrome? " ....and were actually trying to look it up in a medical dictionary

before transporting my son to ER! Talk about them being nutty. Makes me mad.

Oh well. Thanks for listening to me.

Love,

~LoneStarRose~

(~~)

[Guest guest]

,

Sorry you had such a bad day. Hang in there. Doctors seem to hate it when the

patient knows more than they do. Caro

[Guest guest]

Geesh some doctors eh-

I remember when I was in hospital and they were allowing morphine drip even-

another dr thought I shouldnt need pain medication once I was home- he stated

that he felt I was addicted to medications......... I had a hugeeeeeeee hole in

my leg plus EDS......... Some of them can be so ____________________ leaves

blank........ Yet, if they were in same situation, betchya bottom dollar, they'd

definitely be giving their own diagnosis and medications a higher notch than

they give patients.

ventng: this really burns my butt

I need a listening ear while I ramble, please.

I was first told that I have HEDS, which is certainly very true. Then Dr.

Francomano, after doing a very extensive examination of me, sent me a VERY

detailed summary which said

that I also had CEDS. I know it is possible to have more than one EDS type,

but until then, I didn't realize I was one of them. It does make sense. I also

have numerous vascular components and lots of autonomic nervous system

dysfunctions, as well as chronic muskoskeletal pain and muscle spasms. That and

my eyes and orthopedic issues all have to be dealt with

medically/symptomatically/and separately....by various and sundry specialists.

When I fainted in Dec. (due to bp drop, secondary to POTS, secondary to EDS,

etc.) and hit my head HARD (didn't completely knock me out, but definitely

altered my level of consciousness and caused injuries, I was taken by ambulance

to my local ER (tiny hospital, small town, few drs, NONE in ER who know beans

about anything complicated. If there is very much wrong with a person, they are

care flighted to Dallas to a larger facility. The ER people had NO CLUE what was

wrong with me or what caused me to fall. I discovered last Friday that it was

mentioned in my progress notes (which I obtained a copy of for my own records)

that I was taking numerous Rx's from " many prescribers " . DUH!!!!!! Stands to

reason. Yes. I go to " many " specialists for each individual medical problem,

and most have " many " Rx's to treat each condition (IBS, POTS, arthritic, etc.

etc. etc.) DUH!!!! I do not, nor have I ever at any time, abused or misused ANY

medication, Rx or otherwise. In fact, I cannot take opiates at all for pain

control, as they send my IBS off the scale. My

ortho recently said, " for all that is wrong with you, you really don't take

that much daily medication and your dosages are relatively low all things

considered. " Not one single dr. among the MANY specialists I regularly see have

ever so much as hinted either verbally or in their progress notes that they felt

I did not need any/some of the meds which have been prescribed for various

things. On the contrary. All have said that they can see the reasons for each

one, and that I obviously need them. To quote Dr. Heffez, neurosurgeon, " Your

regimen of daily medications was obviously not arrived at quickly, and I would

be very hesitant to alter it in any way. " Sorry for venting, but it really

burned me up to have anything even remotely negative or that even remotely

suggested by thinly veiled implication that I was some kind of " druggie " or

something. That has NEVER

happened to me before, and I have had to take myself AND my two teenage EDSer

sons (with multiple medical problems--serious ones--including POTS, seizures,

etc.) to that ER and hospital MANY times over the years. This type of negative

comment in my medical records has NEVER happened before (and I know, because I

make a regular habit of getting current copies to share with any and all drs.

who see us--I don't want ANY dr. who treats me

or my sons to be unaware of what any other dr. has done or treated us for). I

was not only astounded, but also livid. They didn't know why I passed out and

hit my head. That's the long and short of it. They didn't even come CLOSE to

putting the correct term for POTS (Post Orthostatic Tachycardia Syndrome)

correctly noted nor spelled. Incidentally, these are the same

" medical marvels " who, when the EMT's were called to my son's school back in

Oct. when he collapsed due to both a tonic clonic seizure and convulsive

syncope...asked the school RN " What is Post Orthostatic Tachycardia

Syndrome? " ....and were actually trying to look it up in a medical dictionary

before transporting my son to ER! Talk about them being nutty. Makes me mad.

Oh well. Thanks for listening to me.

Love,

~LoneStarRose~

(~~)

[Guest guest]

Dear ,

Sorry to hear you are going through this. Hang in there!

Hugs,

Sue

[Guest guest]

Hi --

I agree with Caro. It seems some doctors just have to " diagnose " whether they

know what it is or not. And that is not being a " doctor " in my book - it is a

labeler!!

Hope things are better soon. Take care.

Patti

Re: ventng: this really burns my butt

,

Sorry you had such a bad day. Hang in there. Doctors seem to hate it when the

patient knows more than they do. Caro

[Guest guest]

I was reading an article on CNN yesterday about Bush and a new

policy. That he is going to have pharmacies red tag patients that

get multiple drugs from multiple doctors. And look into those

patients for prescription drug abuse.

It is just so frustrating knowning because you go to many doctors

for the many illnesses we have that we may now be singled out and

suspected for drug abuse. this is total stupid.

I tried to find the article again today but am not having any luck.

I keep looking for the article.

Thought you might be intrested in knowing this.

Jen

> I need a listening ear while I ramble, please.

> I was first told that I have HEDS, which is certainly very true.

Then Dr. Francomano, after doing a very extensive examination of me,

sent me a VERY detailed summary which said

> that I also had CEDS. I know it is possible to have more than one

EDS type, but until then, I didn't realize I was one of them. It

does make sense. I also have numerous vascular components and lots

of autonomic nervous system dysfunctions, as well as chronic

muskoskeletal pain and muscle spasms. That and my eyes and

orthopedic issues all have to be dealt with

medically/symptomatically/and separately....by various and sundry

specialists. When I fainted in Dec. (due to bp drop, secondary to

POTS, secondary to EDS, etc.) and hit my head HARD (didn't

completely knock me out, but definitely altered my level of

consciousness and caused injuries, I was taken by ambulance to my

local ER (tiny hospital, small town, few drs, NONE in ER who know

beans about anything complicated. If there is very much wrong with

a person, they are care flighted to Dallas to a larger facility. The

ER people had NO CLUE what was wrong with me or what caused me to

fall. I discovered last Friday that it was mentioned in my progress

notes (which I obtained a copy of for my own records) that I was

taking numerous Rx's from " many prescribers " . DUH!!!!!! Stands to

reason. Yes. I go to " many " specialists for each individual

medical problem, and most have " many " Rx's to treat each condition

(IBS, POTS, arthritic, etc. etc. etc.) DUH!!!! I do not, nor have I

ever at any time, abused or misused ANY medication, Rx or

otherwise. In fact, I cannot take opiates at all for pain control,

as they send my IBS off the scale. My

> ortho recently said, " for all that is wrong with you, you really

don't take that much daily medication and your dosages are

relatively low all things considered. " Not one single dr. among the

MANY specialists I regularly see have ever so much as hinted either

verbally or in their progress notes that they felt I did not need

any/some of the meds which have been prescribed for various things.

On the contrary. All have said that they can see the reasons for

each one, and that I obviously need them. To quote Dr. Heffez,

neurosurgeon, " Your regimen of daily medications was obviously not

arrived at quickly, and I would be very hesitant to alter it in any

way. " Sorry for venting, but it really burned me up to have anything

even remotely negative or that even remotely suggested by thinly

veiled implication that I was some kind of " druggie " or something.

That has NEVER

> happened to me before, and I have had to take myself AND my two

teenage EDSer sons (with multiple medical problems--serious ones--

including POTS, seizures, etc.) to that ER and hospital MANY times

over the years. This type of negative comment in my medical records

has NEVER happened before (and I know, because I make a regular

habit of getting current copies to share with any and all drs. who

see us--I don't want ANY dr. who treats me

> or my sons to be unaware of what any other dr. has done or treated

us for). I was not only astounded, but also livid. They didn't know

why I passed out and hit my head. That's the long and short of it.

They didn't even come CLOSE to putting the correct term for POTS

(Post Orthostatic Tachycardia Syndrome) correctly noted nor

spelled. Incidentally, these are the same

> " medical marvels " who, when the EMT's were called to my son's

school back in Oct. when he collapsed due to both a tonic clonic

seizure and convulsive syncope...asked the school RN " What is Post

Orthostatic Tachycardia Syndrome? " ....and were actually trying to

look it up in a medical dictionary before transporting my son to

ER! Talk about them being nutty. Makes me mad. Oh well. Thanks

for listening to me.

> Love,

> ~LoneStarRose~

> (~~)

>

>

>

[Guest guest]

I was reading an article on CNN yesterday about Bush and a new

policy. That he is going to have pharmacies red tag patients that

get multiple drugs from multiple doctors. And look into those

patients for prescription drug abuse.

It is just so frustrating knowning because you go to many doctors

for the many illnesses we have that we may now be singled out and

suspected for drug abuse. this is total stupid.

I tried to find the article again today but am not having any luck.

I keep looking for the article.

Thought you might be intrested in knowing this.

Jen

> I need a listening ear while I ramble, please.

> I was first told that I have HEDS, which is certainly very true.

Then Dr. Francomano, after doing a very extensive examination of me,

sent me a VERY detailed summary which said

> that I also had CEDS. I know it is possible to have more than one

EDS type, but until then, I didn't realize I was one of them. It

does make sense. I also have numerous vascular components and lots

of autonomic nervous system dysfunctions, as well as chronic

muskoskeletal pain and muscle spasms. That and my eyes and

orthopedic issues all have to be dealt with

medically/symptomatically/and separately....by various and sundry

specialists. When I fainted in Dec. (due to bp drop, secondary to

POTS, secondary to EDS, etc.) and hit my head HARD (didn't

completely knock me out, but definitely altered my level of

consciousness and caused injuries, I was taken by ambulance to my

local ER (tiny hospital, small town, few drs, NONE in ER who know

beans about anything complicated. If there is very much wrong with

a person, they are care flighted to Dallas to a larger facility. The

ER people had NO CLUE what was wrong with me or what caused me to

fall. I discovered last Friday that it was mentioned in my progress

notes (which I obtained a copy of for my own records) that I was

taking numerous Rx's from " many prescribers " . DUH!!!!!! Stands to

reason. Yes. I go to " many " specialists for each individual

medical problem, and most have " many " Rx's to treat each condition

(IBS, POTS, arthritic, etc. etc. etc.) DUH!!!! I do not, nor have I

ever at any time, abused or misused ANY medication, Rx or

otherwise. In fact, I cannot take opiates at all for pain control,

as they send my IBS off the scale. My

> ortho recently said, " for all that is wrong with you, you really

don't take that much daily medication and your dosages are

relatively low all things considered. " Not one single dr. among the

MANY specialists I regularly see have ever so much as hinted either

verbally or in their progress notes that they felt I did not need

any/some of the meds which have been prescribed for various things.

On the contrary. All have said that they can see the reasons for

each one, and that I obviously need them. To quote Dr. Heffez,

neurosurgeon, " Your regimen of daily medications was obviously not

arrived at quickly, and I would be very hesitant to alter it in any

way. " Sorry for venting, but it really burned me up to have anything

even remotely negative or that even remotely suggested by thinly

veiled implication that I was some kind of " druggie " or something.

That has NEVER

> happened to me before, and I have had to take myself AND my two

teenage EDSer sons (with multiple medical problems--serious ones--

including POTS, seizures, etc.) to that ER and hospital MANY times

over the years. This type of negative comment in my medical records

has NEVER happened before (and I know, because I make a regular

habit of getting current copies to share with any and all drs. who

see us--I don't want ANY dr. who treats me

> or my sons to be unaware of what any other dr. has done or treated

us for). I was not only astounded, but also livid. They didn't know

why I passed out and hit my head. That's the long and short of it.

They didn't even come CLOSE to putting the correct term for POTS

(Post Orthostatic Tachycardia Syndrome) correctly noted nor

spelled. Incidentally, these are the same

> " medical marvels " who, when the EMT's were called to my son's

school back in Oct. when he collapsed due to both a tonic clonic

seizure and convulsive syncope...asked the school RN " What is Post

Orthostatic Tachycardia Syndrome? " ....and were actually trying to

look it up in a medical dictionary before transporting my son to

ER! Talk about them being nutty. Makes me mad. Oh well. Thanks

for listening to me.

> Love,

> ~LoneStarRose~

> (~~)

>

>

>

[Guest guest]

I was reading an article on CNN yesterday about Bush and a new

policy. That he is going to have pharmacies red tag patients that

get multiple drugs from multiple doctors. And look into those

patients for prescription drug abuse.

It is just so frustrating knowning because you go to many doctors

for the many illnesses we have that we may now be singled out and

suspected for drug abuse. this is total stupid.

I tried to find the article again today but am not having any luck.

I keep looking for the article.

Thought you might be intrested in knowing this.

Jen

> I need a listening ear while I ramble, please.

> I was first told that I have HEDS, which is certainly very true.

Then Dr. Francomano, after doing a very extensive examination of me,

sent me a VERY detailed summary which said

> that I also had CEDS. I know it is possible to have more than one

EDS type, but until then, I didn't realize I was one of them. It

does make sense. I also have numerous vascular components and lots

of autonomic nervous system dysfunctions, as well as chronic

muskoskeletal pain and muscle spasms. That and my eyes and

orthopedic issues all have to be dealt with

medically/symptomatically/and separately....by various and sundry

specialists. When I fainted in Dec. (due to bp drop, secondary to

POTS, secondary to EDS, etc.) and hit my head HARD (didn't

completely knock me out, but definitely altered my level of

consciousness and caused injuries, I was taken by ambulance to my

local ER (tiny hospital, small town, few drs, NONE in ER who know

beans about anything complicated. If there is very much wrong with

a person, they are care flighted to Dallas to a larger facility. The

ER people had NO CLUE what was wrong with me or what caused me to

fall. I discovered last Friday that it was mentioned in my progress

notes (which I obtained a copy of for my own records) that I was

taking numerous Rx's from " many prescribers " . DUH!!!!!! Stands to

reason. Yes. I go to " many " specialists for each individual

medical problem, and most have " many " Rx's to treat each condition

(IBS, POTS, arthritic, etc. etc. etc.) DUH!!!! I do not, nor have I

ever at any time, abused or misused ANY medication, Rx or

otherwise. In fact, I cannot take opiates at all for pain control,

as they send my IBS off the scale. My

> ortho recently said, " for all that is wrong with you, you really

don't take that much daily medication and your dosages are

relatively low all things considered. " Not one single dr. among the

MANY specialists I regularly see have ever so much as hinted either

verbally or in their progress notes that they felt I did not need

any/some of the meds which have been prescribed for various things.

On the contrary. All have said that they can see the reasons for

each one, and that I obviously need them. To quote Dr. Heffez,

neurosurgeon, " Your regimen of daily medications was obviously not

arrived at quickly, and I would be very hesitant to alter it in any

way. " Sorry for venting, but it really burned me up to have anything

even remotely negative or that even remotely suggested by thinly

veiled implication that I was some kind of " druggie " or something.

That has NEVER

> happened to me before, and I have had to take myself AND my two

teenage EDSer sons (with multiple medical problems--serious ones--

including POTS, seizures, etc.) to that ER and hospital MANY times

over the years. This type of negative comment in my medical records

has NEVER happened before (and I know, because I make a regular

habit of getting current copies to share with any and all drs. who

see us--I don't want ANY dr. who treats me

> or my sons to be unaware of what any other dr. has done or treated

us for). I was not only astounded, but also livid. They didn't know

why I passed out and hit my head. That's the long and short of it.

They didn't even come CLOSE to putting the correct term for POTS

(Post Orthostatic Tachycardia Syndrome) correctly noted nor

spelled. Incidentally, these are the same

> " medical marvels " who, when the EMT's were called to my son's

school back in Oct. when he collapsed due to both a tonic clonic

seizure and convulsive syncope...asked the school RN " What is Post

Orthostatic Tachycardia Syndrome? " ....and were actually trying to

look it up in a medical dictionary before transporting my son to

ER! Talk about them being nutty. Makes me mad. Oh well. Thanks

for listening to me.

> Love,

> ~LoneStarRose~

> (~~)

>

>

>

[Guest guest]

That's awful to read, it really is a case of big brother then is this does

pan out!

Jill

Re: ventng: this really burns my butt

I was reading an article on CNN yesterday about Bush and a new

policy. That he is going to have pharmacies red tag patients that

get multiple drugs from multiple doctors. And look into those

patients for prescription drug abuse.

[Guest guest]

That's awful to read, it really is a case of big brother then is this does

pan out!

Jill

Re: ventng: this really burns my butt

I was reading an article on CNN yesterday about Bush and a new

policy. That he is going to have pharmacies red tag patients that

get multiple drugs from multiple doctors. And look into those

patients for prescription drug abuse.

[Guest guest]

This must be frustrating for you , I know how you feel - I think the

whole list knows how you feel as we've all experienced this in one way or

another. It's so important to surround yourself with people you know are

well informed people on your team, but it's difficult when you have to admit

someone new to the picture, if even only for a day, and expect them to fit

it.

Share your experience with the rest of your team and see if they can help

you establish a strategy to deal with this effectively.

Hang in there, and how are you doing after the fall????

Jill

[Guest guest]

This must be frustrating for you , I know how you feel - I think the

whole list knows how you feel as we've all experienced this in one way or

another. It's so important to surround yourself with people you know are

well informed people on your team, but it's difficult when you have to admit

someone new to the picture, if even only for a day, and expect them to fit

it.

Share your experience with the rest of your team and see if they can help

you establish a strategy to deal with this effectively.

Hang in there, and how are you doing after the fall????

Jill