Take My Doctors-Please Take Them....lol

[Guest guest]

Oh my......their need to know is far exceeding mine at this moment.

Monday will be the 17th different doctor I will have seen this year and

she's already wanting to conduct an EMG. She's a neurologist and

reviewed my records yesterday, then had her assistant call to schedule

the EMG for Monday afternoon (I see her Monday morning). I declined,

saying not until I saw the doctor, found out what was to be learned and

how that might benefit me.

Ok, I'm fine with most of my doctors:

Primary I need.

Pulmonologist, definitely.

Neurologist, annually for restless limbs and peripheral neuropathy.

Nephrologist, kidney problems that need regular monitoring and

attention.

Gastroenterologist-Annually as he does not want to scope or anything

invasive so its just a matter of keeping the meds coming for GERD and

related issues.

ENT-Annually or so is fine to follow up on prior cholesteotoma and

surgery and hearing loss and tinnitus and sinus problems.

Opthalmologist-Annually is good.

Psychiatrist-Every six months for renew of meds.

Counselor-With all these others, omg yes, need her.

Physical Therapy-Only when I have a flare up.

Dermatologist-I still am searching for sane one but low priority.

Ok, I'm fine with those eleven and even seeing the rheumatologist 3

times a year for monitoring.

I will probably see the transplant coordinator one more time but that

will probably be that since I'm not a good candidate.

But here is where its gone wild. Ok, pulmonologists and rheumatologists

decide before I have no autoimmune. I go to University of Chicago. They

feel I probably have an underlying connective tissue disease such as

Undifferentiated Connective Tissue Disease or Polymyositis. So, I see

rheumatologist here and he does more blood work. He sends me to my

neurologist, who says no sign of muscle disease and no need for EMG.

Rheumatologist finds nothing on which to diagnose a connective tissue

disease but sends me to another for second opinion. New rheumatologist

find nothing to indicate one and agrees with first who disagreed with U

of Chicago pulmonology area. Now rheumatologist also wants me to seen

second opinion neurologist (who actually is third opinion because I went

to UTSW for second prior to ever being diagnosed with PF). She's the one

now wanting to do the EMG.

And all this to find out if I have something which is not manifesting

itself in any way other than perhaps the UIP, but very doubtful there.

Something that they feel I don't have but still want to check more. They

can just do an autopsy when I'm gone as I'm about to call a halt to

their quest of infinite knowledge. One or two more appointments is my

limit on this subject until some symptoms start impacting me.

The other doctor I could do without seeing is my Oncologist. Ok, first

referral for swollen lymph nodes made sense. But after 16 CT's and 16

months and they haven't grown, they aren't cancer. But then every doctor

wants something else checked. PTH is high so go there for possible

parathyroid cancer-negative. Faint Kappa on other test so go there for

possible Myeloma. Not yet, going for follow up on test. God to

dermatologist for skin biopsy. Dermatologist says don't need one.

Rheumatologist says talk about Sarcoid again to Pulmonologist.

Pulmonologist says biopsies show none, not doing another biopsy by any

means, and if I did have it what then, so he and I have no interest at

the moment.

Thoroughness has gone to the extreme. At one time I might have cared

about some remote possible disease not yet found. At this point, if I

don't have real symptoms, if it isn't impairing my life, I no longer

feel such a need to know. I'm doing well and enjoying life except for

too many doctors.

They are officially on a timetable. They have one month to finish this

crap and then they are on limits. Even these limits sound ridiculously

high but I know I have a lot of conditions so I can live with them.

2009 Doctor visit limits-Primary 3 (assumes one non-routine),

Pulmonologist 5 (assumes one non-routine), Gastroenterologist 1,

Rheumatologist 3, Nephrologist 4, ENT 1, Opthalmologist 1, Psychiatrist

2, Dermatologist 3, Physical Therapy (Only if have back problems),

Neurologist 1. Thats 24 plus 24 to my counselor and if they want more

they'll just have to see someone else. lol.

I think I'll just create a schedule and send it to them and say.....this

is when I'll be in. And they may not even get that many. I'm leaving

town, maybe the country. SGIO, I'm on my way....lol. I'll find a

pharmacy on the tropical island to refill my meds and I'm set. No new

conditions allowed.

[Guest guest]

OMGosh Bruce ... you need some Calgon to rub on yourself in the shower...it may "take you away" from all the medical stuff for awhile. We all know how thorough you are. I'm with you, after awhile it gets to be just too much.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Take My Doctors-Please Take Them....lol

Oh my......their need to know is far exceeding mine at this moment.Monday will be the 17th different doctor I will have seen this year andshe's already wanting to conduct an EMG. She's a neurologist andreviewed my records yesterday, then had her assistant call to schedulethe EMG for Monday afternoon (I see her Monday morning). I declined,saying not until I saw the doctor, found out what was to be learned andhow that might benefit me.Ok, I'm fine with most of my doctors:Primary I need.Pulmonologist, definitely.Neurologist, annually for restless limbs and peripheral neuropathy.Nephrologist, kidney problems that need regular monitoring andattention.Gastroenterologist-Annually as he does not want to scope or anythinginvasive so its just a matter of keeping the meds coming for GERD andrelated issues.ENT-Annually or so is fine to follow up on prior cholesteotoma andsurgery and hearing loss and tinnitus and sinus problems.Opthalmologist-Annually is good.Psychiatrist-Every six months for renew of meds.Counselor-With all these others, omg yes, need her.Physical Therapy-Only when I have a flare up.Dermatologist-I still am searching for sane one but low priority.Ok, I'm fine with those eleven and even seeing the rheumatologist 3times a year for monitoring.I will probably see the transplant coordinator one more time but thatwill probably be that since I'm not a good candidate.But here is where its gone wild. Ok, pulmonologists and rheumatologistsdecide before I have no autoimmune. I go to University of Chicago. Theyfeel I probably have an underlying connective tissue disease such asUndifferentiated Connective Tissue Disease or Polymyositis. So, I seerheumatologist here and he does more blood work. He sends me to myneurologist, who says no sign of muscle disease and no need for EMG.Rheumatologist finds nothing on which to diagnose a connective tissuedisease but sends me to another for second opinion. New rheumatologistfind nothing to indicate one and agrees with first who disagreed with Uof Chicago pulmonology area. Now rheumatologist also wants me to seensecond opinion neurologist (who actually is third opinion because I wentto UTSW for second prior to ever being diagnosed with PF). She's the onenow wanting to do the EMG.And all this to find out if I have something which is not manifestingitself in any way other than perhaps the UIP, but very doubtful there.Something that they feel I don't have but still want to check more. Theycan just do an autopsy when I'm gone as I'm about to call a halt totheir quest of infinite knowledge. One or two more appointments is mylimit on this subject until some symptoms start impacting me.The other doctor I could do without seeing is my Oncologist. Ok, firstreferral for swollen lymph nodes made sense. But after 16 CT's and 16months and they haven't grown, they aren't cancer. But then every doctorwants something else checked. PTH is high so go there for possibleparathyroid cancer-negative. Faint Kappa on other test so go there forpossible Myeloma. Not yet, going for follow up on test. God todermatologist for skin biopsy. Dermatologist says don't need one.Rheumatologist says talk about Sarcoid again to Pulmonologist.Pulmonologist says biopsies show none, not doing another biopsy by anymeans, and if I did have it what then, so he and I have no interest atthe moment.Thoroughness has gone to the extreme. At one time I might have caredabout some remote possible disease not yet found. At this point, if Idon't have real symptoms, if it isn't impairing my life, I no longerfeel such a need to know. I'm doing well and enjoying life except fortoo many doctors.They are officially on a timetable. They have one month to finish thiscrap and then they are on limits. Even these limits sound ridiculouslyhigh but I know I have a lot of conditions so I can live with them.2009 Doctor visit limits-Primary 3 (assumes one non-routine),Pulmonologist 5 (assumes one non-routine), Gastroenterologist 1,Rheumatologist 3, Nephrologist 4, ENT 1, Opthalmologist 1, Psychiatrist2, Dermatologist 3, Physical Therapy (Only if have back problems),Neurologist 1. Thats 24 plus 24 to my counselor and if they want morethey'll just have to see someone else. lol.I think I'll just create a schedule and send it to them and say.....thisis when I'll be in. And they may not even get that many. I'm leavingtown, maybe the country. SGIO, I'm on my way....lol. I'll find apharmacy on the tropical island to refill my meds and I'm set. No newconditions allowed.

[Guest guest]

Good Grief!! Bruce, don't ever leave this group, if you decide to go

to an island, you have to take all of us with you.

Lou

>

>

> Oh my......their need to know is far exceeding mine at this moment.

> Monday will be the 17th different doctor I will have seen this year

and

> she's already wanting to conduct an EMG. She's a neurologist and

> reviewed my records yesterday, then had her assistant call to

schedule

> the EMG for Monday afternoon (I see her Monday morning). I declined,

> saying not until I saw the doctor, found out what was to be learned

and

> how that might benefit me.

>

> Ok, I'm fine with most of my doctors:

>

> Primary I need.

>

> Pulmonologist, definitely.

>

> Neurologist, annually for restless limbs and peripheral neuropathy.

>

> Nephrologist, kidney problems that need regular monitoring and

> attention.

>

> Gastroenterologist-Annually as he does not want to scope or anything

> invasive so its just a matter of keeping the meds coming for GERD

and

> related issues.

>

> ENT-Annually or so is fine to follow up on prior cholesteotoma and

> surgery and hearing loss and tinnitus and sinus problems.

>

> Opthalmologist-Annually is good.

>

> Psychiatrist-Every six months for renew of meds.

>

> Counselor-With all these others, omg yes, need her.

>

> Physical Therapy-Only when I have a flare up.

>

> Dermatologist-I still am searching for sane one but low priority.

>

> Ok, I'm fine with those eleven and even seeing the rheumatologist 3

> times a year for monitoring.

>

> I will probably see the transplant coordinator one more time but

that

> will probably be that since I'm not a good candidate.

>

> But here is where its gone wild. Ok, pulmonologists and

rheumatologists

> decide before I have no autoimmune. I go to University of Chicago.

They

> feel I probably have an underlying connective tissue disease such as

> Undifferentiated Connective Tissue Disease or Polymyositis. So, I

see

> rheumatologist here and he does more blood work. He sends me to my

> neurologist, who says no sign of muscle disease and no need for EMG.

> Rheumatologist finds nothing on which to diagnose a connective

tissue

> disease but sends me to another for second opinion. New

rheumatologist

> find nothing to indicate one and agrees with first who disagreed

with U

> of Chicago pulmonology area. Now rheumatologist also wants me to

seen

> second opinion neurologist (who actually is third opinion because I

went

> to UTSW for second prior to ever being diagnosed with PF). She's

the one

> now wanting to do the EMG.

>

> And all this to find out if I have something which is not

manifesting

> itself in any way other than perhaps the UIP, but very doubtful

there.

> Something that they feel I don't have but still want to check more.

They

> can just do an autopsy when I'm gone as I'm about to call a halt to

> their quest of infinite knowledge. One or two more appointments is

my

> limit on this subject until some symptoms start impacting me.

>

> The other doctor I could do without seeing is my Oncologist. Ok,

first

> referral for swollen lymph nodes made sense. But after 16 CT's and

16

> months and they haven't grown, they aren't cancer. But then every

doctor

> wants something else checked. PTH is high so go there for possible

> parathyroid cancer-negative. Faint Kappa on other test so go there

for

> possible Myeloma. Not yet, going for follow up on test. God to

> dermatologist for skin biopsy. Dermatologist says don't need one.

> Rheumatologist says talk about Sarcoid again to Pulmonologist.

> Pulmonologist says biopsies show none, not doing another biopsy by

any

> means, and if I did have it what then, so he and I have no interest

at

> the moment.

>

> Thoroughness has gone to the extreme. At one time I might have cared

> about some remote possible disease not yet found. At this point, if

I

> don't have real symptoms, if it isn't impairing my life, I no longer

> feel such a need to know. I'm doing well and enjoying life except

for

> too many doctors.

>

> They are officially on a timetable. They have one month to finish

this

> crap and then they are on limits. Even these limits sound

ridiculously

> high but I know I have a lot of conditions so I can live with them.

>

> 2009 Doctor visit limits-Primary 3 (assumes one non-routine),

> Pulmonologist 5 (assumes one non-routine), Gastroenterologist 1,

> Rheumatologist 3, Nephrologist 4, ENT 1, Opthalmologist 1,

Psychiatrist

> 2, Dermatologist 3, Physical Therapy (Only if have back problems),

> Neurologist 1. Thats 24 plus 24 to my counselor and if they want

more

> they'll just have to see someone else. lol.

>

> I think I'll just create a schedule and send it to them and

say.....this

> is when I'll be in. And they may not even get that many. I'm leaving

> town, maybe the country. SGIO, I'm on my way....lol. I'll find a

> pharmacy on the tropical island to refill my meds and I'm set. No

new

> conditions allowed.

>

[Guest guest]

Lou

Oh the island has to have internet. At least a huge tower or something

to receive it. Life for me without internet? No way.....

> >

> >

> > Oh my......their need to know is far exceeding mine at this moment.

> > Monday will be the 17th different doctor I will have seen this year

> and

> > she's already wanting to conduct an EMG. She's a neurologist and

> > reviewed my records yesterday, then had her assistant call to

> schedule

> > the EMG for Monday afternoon (I see her Monday morning). I declined,

> > saying not until I saw the doctor, found out what was to be learned

> and

> > how that might benefit me.

> >

> > Ok, I'm fine with most of my doctors:

> >

> > Primary I need.

> >

> > Pulmonologist, definitely.

> >

> > Neurologist, annually for restless limbs and peripheral neuropathy.

> >

> > Nephrologist, kidney problems that need regular monitoring and

> > attention.

> >

> > Gastroenterologist-Annually as he does not want to scope or anything

> > invasive so its just a matter of keeping the meds coming for GERD

> and

> > related issues.

> >

> > ENT-Annually or so is fine to follow up on prior cholesteotoma and

> > surgery and hearing loss and tinnitus and sinus problems.

> >

> > Opthalmologist-Annually is good.

> >

> > Psychiatrist-Every six months for renew of meds.

> >

> > Counselor-With all these others, omg yes, need her.

> >

> > Physical Therapy-Only when I have a flare up.

> >

> > Dermatologist-I still am searching for sane one but low priority.

> >

> > Ok, I'm fine with those eleven and even seeing the rheumatologist 3

> > times a year for monitoring.

> >

> > I will probably see the transplant coordinator one more time but

> that

> > will probably be that since I'm not a good candidate.

> >

> > But here is where its gone wild. Ok, pulmonologists and

> rheumatologists

> > decide before I have no autoimmune. I go to University of Chicago.

> They

> > feel I probably have an underlying connective tissue disease such as

> > Undifferentiated Connective Tissue Disease or Polymyositis. So, I

> see

> > rheumatologist here and he does more blood work. He sends me to my

> > neurologist, who says no sign of muscle disease and no need for EMG.

> > Rheumatologist finds nothing on which to diagnose a connective

> tissue

> > disease but sends me to another for second opinion. New

> rheumatologist

> > find nothing to indicate one and agrees with first who disagreed

> with U

> > of Chicago pulmonology area. Now rheumatologist also wants me to

> seen

> > second opinion neurologist (who actually is third opinion because I

> went

> > to UTSW for second prior to ever being diagnosed with PF). She's

> the one

> > now wanting to do the EMG.

> >

> > And all this to find out if I have something which is not

> manifesting

> > itself in any way other than perhaps the UIP, but very doubtful

> there.

> > Something that they feel I don't have but still want to check more.

> They

> > can just do an autopsy when I'm gone as I'm about to call a halt to

> > their quest of infinite knowledge. One or two more appointments is

> my

> > limit on this subject until some symptoms start impacting me.

> >

> > The other doctor I could do without seeing is my Oncologist. Ok,

> first

> > referral for swollen lymph nodes made sense. But after 16 CT's and

> 16

> > months and they haven't grown, they aren't cancer. But then every

> doctor

> > wants something else checked. PTH is high so go there for possible

> > parathyroid cancer-negative. Faint Kappa on other test so go there

> for

> > possible Myeloma. Not yet, going for follow up on test. God to

> > dermatologist for skin biopsy. Dermatologist says don't need one.

> > Rheumatologist says talk about Sarcoid again to Pulmonologist.

> > Pulmonologist says biopsies show none, not doing another biopsy by

> any

> > means, and if I did have it what then, so he and I have no interest

> at

> > the moment.

> >

> > Thoroughness has gone to the extreme. At one time I might have cared

> > about some remote possible disease not yet found. At this point, if

> I

> > don't have real symptoms, if it isn't impairing my life, I no longer

> > feel such a need to know. I'm doing well and enjoying life except

> for

> > too many doctors.

> >

> > They are officially on a timetable. They have one month to finish

> this

> > crap and then they are on limits. Even these limits sound

> ridiculously

> > high but I know I have a lot of conditions so I can live with them.

> >

> > 2009 Doctor visit limits-Primary 3 (assumes one non-routine),

> > Pulmonologist 5 (assumes one non-routine), Gastroenterologist 1,

> > Rheumatologist 3, Nephrologist 4, ENT 1, Opthalmologist 1,

> Psychiatrist

> > 2, Dermatologist 3, Physical Therapy (Only if have back problems),

> > Neurologist 1. Thats 24 plus 24 to my counselor and if they want

> more

> > they'll just have to see someone else. lol.

> >

> > I think I'll just create a schedule and send it to them and

> say.....this

> > is when I'll be in. And they may not even get that many. I'm leaving

> > town, maybe the country. SGIO, I'm on my way....lol. I'll find a

> > pharmacy on the tropical island to refill my meds and I'm set. No

> new

> > conditions allowed.

> >

>

[Guest guest]

BRUCE, " I WILL BRING " GENIE " WITH ME,

mary lou

> > >

> > >

> > > Oh my......their need to know is far exceeding mine at this

moment.

> > > Monday will be the 17th different doctor I will have seen this

year

> > and

> > > she's already wanting to conduct an EMG. She's a neurologist and

> > > reviewed my records yesterday, then had her assistant call to

> > schedule

> > > the EMG for Monday afternoon (I see her Monday morning). I

declined,

> > > saying not until I saw the doctor, found out what was to be

learned

> > and

> > > how that might benefit me.

> > >

> > > Ok, I'm fine with most of my doctors:

> > >

> > > Primary I need.

> > >

> > > Pulmonologist, definitely.

> > >

> > > Neurologist, annually for restless limbs and peripheral

neuropathy.

> > >

> > > Nephrologist, kidney problems that need regular monitoring and

> > > attention.

> > >

> > > Gastroenterologist-Annually as he does not want to scope or

anything

> > > invasive so its just a matter of keeping the meds coming for

GERD

> > and

> > > related issues.

> > >

> > > ENT-Annually or so is fine to follow up on prior cholesteotoma

and

> > > surgery and hearing loss and tinnitus and sinus problems.

> > >

> > > Opthalmologist-Annually is good.

> > >

> > > Psychiatrist-Every six months for renew of meds.

> > >

> > > Counselor-With all these others, omg yes, need her.

> > >

> > > Physical Therapy-Only when I have a flare up.

> > >

> > > Dermatologist-I still am searching for sane one but low

priority.

> > >

> > > Ok, I'm fine with those eleven and even seeing the

rheumatologist 3

> > > times a year for monitoring.

> > >

> > > I will probably see the transplant coordinator one more time but

> > that

> > > will probably be that since I'm not a good candidate.

> > >

> > > But here is where its gone wild. Ok, pulmonologists and

> > rheumatologists

> > > decide before I have no autoimmune. I go to University of

Chicago.

> > They

> > > feel I probably have an underlying connective tissue disease

such as

> > > Undifferentiated Connective Tissue Disease or Polymyositis. So,

I

> > see

> > > rheumatologist here and he does more blood work. He sends me to

my

> > > neurologist, who says no sign of muscle disease and no need for

EMG.

> > > Rheumatologist finds nothing on which to diagnose a connective

> > tissue

> > > disease but sends me to another for second opinion. New

> > rheumatologist

> > > find nothing to indicate one and agrees with first who disagreed

> > with U

> > > of Chicago pulmonology area. Now rheumatologist also wants me to

> > seen

> > > second opinion neurologist (who actually is third opinion

because I

> > went

> > > to UTSW for second prior to ever being diagnosed with PF). She's

> > the one

> > > now wanting to do the EMG.

> > >

> > > And all this to find out if I have something which is not

> > manifesting

> > > itself in any way other than perhaps the UIP, but very doubtful

> > there.

> > > Something that they feel I don't have but still want to check

more.

> > They

> > > can just do an autopsy when I'm gone as I'm about to call a

halt to

> > > their quest of infinite knowledge. One or two more appointments

is

> > my

> > > limit on this subject until some symptoms start impacting me.

> > >

> > > The other doctor I could do without seeing is my Oncologist. Ok,

> > first

> > > referral for swollen lymph nodes made sense. But after 16 CT's

and

> > 16

> > > months and they haven't grown, they aren't cancer. But then

every

> > doctor

> > > wants something else checked. PTH is high so go there for

possible

> > > parathyroid cancer-negative. Faint Kappa on other test so go

there

> > for

> > > possible Myeloma. Not yet, going for follow up on test. God to

> > > dermatologist for skin biopsy. Dermatologist says don't need

one.

> > > Rheumatologist says talk about Sarcoid again to Pulmonologist.

> > > Pulmonologist says biopsies show none, not doing another biopsy

by

> > any

> > > means, and if I did have it what then, so he and I have no

interest

> > at

> > > the moment.

> > >

> > > Thoroughness has gone to the extreme. At one time I might have

cared

> > > about some remote possible disease not yet found. At this

point, if

> > I

> > > don't have real symptoms, if it isn't impairing my life, I no

longer

> > > feel such a need to know. I'm doing well and enjoying life

except

> > for

> > > too many doctors.

> > >

> > > They are officially on a timetable. They have one month to

finish

> > this

> > > crap and then they are on limits. Even these limits sound

> > ridiculously

> > > high but I know I have a lot of conditions so I can live with

them.

> > >

> > > 2009 Doctor visit limits-Primary 3 (assumes one non-routine),

> > > Pulmonologist 5 (assumes one non-routine), Gastroenterologist 1,

> > > Rheumatologist 3, Nephrologist 4, ENT 1, Opthalmologist 1,

> > Psychiatrist

> > > 2, Dermatologist 3, Physical Therapy (Only if have back

problems),

> > > Neurologist 1. Thats 24 plus 24 to my counselor and if they want

> > more

> > > they'll just have to see someone else. lol.

> > >

> > > I think I'll just create a schedule and send it to them and

> > say.....this

> > > is when I'll be in. And they may not even get that many. I'm

leaving

> > > town, maybe the country. SGIO, I'm on my way....lol. I'll find a

> > > pharmacy on the tropical island to refill my meds and I'm set.

No

> > new

> > > conditions allowed.

> > >

> >

>

[Guest guest]

All I can say is "WOW", Bruce, and God bless you. Seeing all those doctorswould be a full-time occupation I would not enjoy. I'm sure you don't either!

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Saturday, November 8, 2008 1:18:36 PMSubject: Take My Doctors-Please Take Them....lol

Oh my......their need to know is far exceeding mine at this moment.Monday will be the 17th different doctor I will have seen this year andshe's already wanting to conduct an EMG. She's a neurologist andreviewed my records yesterday, then had her assistant call to schedulethe EMG for Monday afternoon (I see her Monday morning). I declined,saying not until I saw the doctor, found out what was to be learned andhow that might benefit me.Ok, I'm fine with most of my doctors:Primary I need.Pulmonologist, definitely.Neurologist, annually for restless limbs and peripheral neuropathy.Nephrologist, kidney problems that need regular monitoring andattention.Gastroenterologist- Annually as he does not want to scope or anythinginvasive so its just a matter of keeping the meds coming for GERD andrelated issues.ENT-Annually or so is fine to follow up on prior cholesteotoma

andsurgery and hearing loss and tinnitus and sinus problems.Opthalmologist- Annually is good.Psychiatrist- Every six months for renew of meds.Counselor-With all these others, omg yes, need her.Physical Therapy-Only when I have a flare up.Dermatologist- I still am searching for sane one but low priority.Ok, I'm fine with those eleven and even seeing the rheumatologist 3times a year for monitoring.I will probably see the transplant coordinator one more time but thatwill probably be that since I'm not a good candidate.But here is where its gone wild. Ok, pulmonologists and rheumatologistsdecide before I have no autoimmune. I go to University of Chicago. Theyfeel I probably have an underlying connective tissue disease such asUndifferentiated Connective Tissue Disease or Polymyositis. So, I seerheumatologist here and he does more blood work. He sends me to

myneurologist, who says no sign of muscle disease and no need for EMG.Rheumatologist finds nothing on which to diagnose a connective tissuedisease but sends me to another for second opinion. New rheumatologistfind nothing to indicate one and agrees with first who disagreed with Uof Chicago pulmonology area. Now rheumatologist also wants me to seensecond opinion neurologist (who actually is third opinion because I wentto UTSW for second prior to ever being diagnosed with PF). She's the onenow wanting to do the EMG.And all this to find out if I have something which is not manifestingitself in any way other than perhaps the UIP, but very doubtful there.Something that they feel I don't have but still want to check more. Theycan just do an autopsy when I'm gone as I'm about to call a halt totheir quest of infinite knowledge. One or two more appointments is mylimit on this subject until some symptoms

start impacting me.The other doctor I could do without seeing is my Oncologist. Ok, firstreferral for swollen lymph nodes made sense. But after 16 CT's and 16months and they haven't grown, they aren't cancer. But then every doctorwants something else checked. PTH is high so go there for possibleparathyroid cancer-negative. Faint Kappa on other test so go there forpossible Myeloma. Not yet, going for follow up on test. God todermatologist for skin biopsy. Dermatologist says don't need one.Rheumatologist says talk about Sarcoid again to Pulmonologist.Pulmonologist says biopsies show none, not doing another biopsy by anymeans, and if I did have it what then, so he and I have no interest atthe moment.Thoroughness has gone to the extreme. At one time I might have caredabout some remote possible disease not yet found. At this point, if Idon't have real symptoms, if it isn't impairing my life, I

no longerfeel such a need to know. I'm doing well and enjoying life except fortoo many doctors.They are officially on a timetable. They have one month to finish thiscrap and then they are on limits. Even these limits sound ridiculouslyhigh but I know I have a lot of conditions so I can live with them.2009 Doctor visit limits-Primary 3 (assumes one non-routine) ,Pulmonologist 5 (assumes one non-routine) , Gastroenterologist 1,Rheumatologist 3, Nephrologist 4, ENT 1, Opthalmologist 1, Psychiatrist2, Dermatologist 3, Physical Therapy (Only if have back problems),Neurologist 1. Thats 24 plus 24 to my counselor and if they want morethey'll just have to see someone else. lol.I think I'll just create a schedule and send it to them and say.....thisis when I'll be in. And they may not even get that many. I'm leavingtown, maybe the country. SGIO, I'm on my way....lol. I'll find apharmacy on

the tropical island to refill my meds and I'm set. No newconditions allowed.

[Guest guest]

Oh my is right....what you describe is truly a full time job. It makes me even more tired to contemplate it. And you're right sometimes their need to know and analyse and investigate far exceeds ours. It's such a balancing act, isn't it?

Beth-Moderator

Fibrotic NSIP 06/06 UCTD 06/08

"Take chances, make mistakes and get messy!"

Miss Frizzle

To: Breathe-Support Sent: Saturday, November 8, 2008 1:18:36 PMSubject: Take My Doctors-Please Take Them....lol

Oh my......their need to know is far exceeding mine at this moment.Monday will be the 17th different doctor I will have seen this year andshe's already wanting to conduct an EMG. She's a neurologist andreviewed my records yesterday, then had her assistant call to schedulethe EMG for Monday afternoon (I see her Monday morning). I declined,saying not until I saw the doctor, found out what was to be learned andhow that might benefit me.Ok, I'm fine with most of my doctors:Primary I need.Pulmonologist, definitely.Neurologist, annually for restless limbs and peripheral neuropathy.Nephrologist, kidney problems that need regular monitoring andattention.Gastroenterologist- Annually as he does not want to scope or anythinginvasive so its just a matter of keeping the meds coming for GERD andrelated issues.ENT-Annually or so is fine to follow up on prior cholesteotoma

andsurgery and hearing loss and tinnitus and sinus problems.Opthalmologist- Annually is good.Psychiatrist- Every six months for renew of meds.Counselor-With all these others, omg yes, need her.Physical Therapy-Only when I have a flare up.Dermatologist- I still am searching for sane one but low priority.Ok, I'm fine with those eleven and even seeing the rheumatologist 3times a year for monitoring.I will probably see the transplant coordinator one more time but thatwill probably be that since I'm not a good candidate.But here is where its gone wild. Ok, pulmonologists and rheumatologistsdecide before I have no autoimmune. I go to University of Chicago. Theyfeel I probably have an underlying connective tissue disease such asUndifferentiated Connective Tissue Disease or Polymyositis. So, I seerheumatologist here and he does more blood work. He sends me to

myneurologist, who says no sign of muscle disease and no need for EMG.Rheumatologist finds nothing on which to diagnose a connective tissuedisease but sends me to another for second opinion. New rheumatologistfind nothing to indicate one and agrees with first who disagreed with Uof Chicago pulmonology area. Now rheumatologist also wants me to seensecond opinion neurologist (who actually is third opinion because I wentto UTSW for second prior to ever being diagnosed with PF). She's the onenow wanting to do the EMG.And all this to find out if I have something which is not manifestingitself in any way other than perhaps the UIP, but very doubtful there.Something that they feel I don't have but still want to check more. Theycan just do an autopsy when I'm gone as I'm about to call a halt totheir quest of infinite knowledge. One or two more appointments is mylimit on this subject until some symptoms

start impacting me.The other doctor I could do without seeing is my Oncologist. Ok, firstreferral for swollen lymph nodes made sense. But after 16 CT's and 16months and they haven't grown, they aren't cancer. But then every doctorwants something else checked. PTH is high so go there for possibleparathyroid cancer-negative. Faint Kappa on other test so go there forpossible Myeloma. Not yet, going for follow up on test. God todermatologist for skin biopsy. Dermatologist says don't need one.Rheumatologist says talk about Sarcoid again to Pulmonologist.Pulmonologist says biopsies show none, not doing another biopsy by anymeans, and if I did have it what then, so he and I have no interest atthe moment.Thoroughness has gone to the extreme. At one time I might have caredabout some remote possible disease not yet found. At this point, if Idon't have real symptoms, if it isn't impairing my life, I

no longerfeel such a need to know. I'm doing well and enjoying life except fortoo many doctors.They are officially on a timetable. They have one month to finish thiscrap and then they are on limits. Even these limits sound ridiculouslyhigh but I know I have a lot of conditions so I can live with them.2009 Doctor visit limits-Primary 3 (assumes one non-routine) ,Pulmonologist 5 (assumes one non-routine) , Gastroenterologist 1,Rheumatologist 3, Nephrologist 4, ENT 1, Opthalmologist 1, Psychiatrist2, Dermatologist 3, Physical Therapy (Only if have back problems),Neurologist 1. Thats 24 plus 24 to my counselor and if they want morethey'll just have to see someone else. lol.I think I'll just create a schedule and send it to them and say.....thisis when I'll be in. And they may not even get that many. I'm leavingtown, maybe the country. SGIO, I'm on my way....lol. I'll find apharmacy on

the tropical island to refill my meds and I'm set. No newconditions allowed.

[Guest guest]

Bruce

read to the end; my goodness. It never ends does it.. I agree with

you. enough is enough with looking for things. I have told my

pulmonologist that i am ready to just see who i have to and if it

means him every 6 weeks then go from there.. Always been healthy and

not too many doctors now i think i've met them all. Only thing not

done MRI on my brain, wouldn't they be surprised... lol... Do you

have any other medical history.. My, PF, they truly believe is from

scleroderma even though the test always negative. So, with my lung

transplant it depends on what progresses quicker. Always, a circus..

patti

>

>

> Oh my......their need to know is far exceeding mine at this moment.

> Monday will be the 17th different doctor I will have seen this

year and

> she's already wanting to conduct an EMG. She's a neurologist and

> reviewed my records yesterday, then had her assistant call to

schedule

> the EMG for Monday afternoon (I see her Monday morning). I

declined,

> saying not until I saw the doctor, found out what was to be

learned and

> how that might benefit me.

>

> Ok, I'm fine with most of my doctors:

>

> Primary I need.

>

> Pulmonologist, definitely.

>

> Neurologist, annually for restless limbs and peripheral neuropathy.

>

> Nephrologist, kidney problems that need regular monitoring and

> attention.

>

> Gastroenterologist-Annually as he does not want to scope or

anything

> invasive so its just a matter of keeping the meds coming for GERD

and

> related issues.

>

> ENT-Annually or so is fine to follow up on prior cholesteotoma and

> surgery and hearing loss and tinnitus and sinus problems.

>

> Opthalmologist-Annually is good.

>

> Psychiatrist-Every six months for renew of meds.

>

> Counselor-With all these others, omg yes, need her.

>

> Physical Therapy-Only when I have a flare up.

>

> Dermatologist-I still am searching for sane one but low priority.

>

> Ok, I'm fine with those eleven and even seeing the rheumatologist 3

> times a year for monitoring.

>

> I will probably see the transplant coordinator one more time but

that

> will probably be that since I'm not a good candidate.

>

> But here is where its gone wild. Ok, pulmonologists and

rheumatologists

> decide before I have no autoimmune. I go to University of Chicago.

They

> feel I probably have an underlying connective tissue disease such

as

> Undifferentiated Connective Tissue Disease or Polymyositis. So, I

see

> rheumatologist here and he does more blood work. He sends me to my

> neurologist, who says no sign of muscle disease and no need for

EMG.

> Rheumatologist finds nothing on which to diagnose a connective

tissue

> disease but sends me to another for second opinion. New

rheumatologist

> find nothing to indicate one and agrees with first who disagreed

with U

> of Chicago pulmonology area. Now rheumatologist also wants me to

seen

> second opinion neurologist (who actually is third opinion because

I went

> to UTSW for second prior to ever being diagnosed with PF). She's

the one

> now wanting to do the EMG.

>

> And all this to find out if I have something which is not

manifesting

> itself in any way other than perhaps the UIP, but very doubtful

there.

> Something that they feel I don't have but still want to check

more. They

> can just do an autopsy when I'm gone as I'm about to call a halt to

> their quest of infinite knowledge. One or two more appointments is

my

> limit on this subject until some symptoms start impacting me.

>

> The other doctor I could do without seeing is my Oncologist. Ok,

first

> referral for swollen lymph nodes made sense. But after 16 CT's and

16

> months and they haven't grown, they aren't cancer. But then every

doctor

> wants something else checked. PTH is high so go there for possible

> parathyroid cancer-negative. Faint Kappa on other test so go there

for

> possible Myeloma. Not yet, going for follow up on test. God to

> dermatologist for skin biopsy. Dermatologist says don't need one.

> Rheumatologist says talk about Sarcoid again to Pulmonologist.

> Pulmonologist says biopsies show none, not doing another biopsy by

any

> means, and if I did have it what then, so he and I have no

interest at

> the moment.

>

> Thoroughness has gone to the extreme. At one time I might have

cared

> about some remote possible disease not yet found. At this point,

if I

> don't have real symptoms, if it isn't impairing my life, I no

longer

> feel such a need to know. I'm doing well and enjoying life except

for

> too many doctors.

>

> They are officially on a timetable. They have one month to finish

this

> crap and then they are on limits. Even these limits sound

ridiculously

> high but I know I have a lot of conditions so I can live with them.

>

> 2009 Doctor visit limits-Primary 3 (assumes one non-routine),

> Pulmonologist 5 (assumes one non-routine), Gastroenterologist 1,

> Rheumatologist 3, Nephrologist 4, ENT 1, Opthalmologist 1,

Psychiatrist

> 2, Dermatologist 3, Physical Therapy (Only if have back problems),

> Neurologist 1. Thats 24 plus 24 to my counselor and if they want

more

> they'll just have to see someone else. lol.

>

> I think I'll just create a schedule and send it to them and

say.....this

> is when I'll be in. And they may not even get that many. I'm

leaving

> town, maybe the country. SGIO, I'm on my way....lol. I'll find a

> pharmacy on the tropical island to refill my meds and I'm set. No

new

> conditions allowed.

>

[Guest guest]

i so agree lol patti

> > >

> > >

> > > Oh my......their need to know is far exceeding mine at this

moment.

> > > Monday will be the 17th different doctor I will have seen this

year

> > and

> > > she's already wanting to conduct an EMG. She's a neurologist

and

> > > reviewed my records yesterday, then had her assistant call to

> > schedule

> > > the EMG for Monday afternoon (I see her Monday morning). I

declined,

> > > saying not until I saw the doctor, found out what was to be

learned

> > and

> > > how that might benefit me.

> > >

> > > Ok, I'm fine with most of my doctors:

> > >

> > > Primary I need.

> > >

> > > Pulmonologist, definitely.

> > >

> > > Neurologist, annually for restless limbs and peripheral

neuropathy.

> > >

> > > Nephrologist, kidney problems that need regular monitoring and

> > > attention.

> > >

> > > Gastroenterologist-Annually as he does not want to scope or

anything

> > > invasive so its just a matter of keeping the meds coming for

GERD

> > and

> > > related issues.

> > >

> > > ENT-Annually or so is fine to follow up on prior cholesteotoma

and

> > > surgery and hearing loss and tinnitus and sinus problems.

> > >

> > > Opthalmologist-Annually is good.

> > >

> > > Psychiatrist-Every six months for renew of meds.

> > >

> > > Counselor-With all these others, omg yes, need her.

> > >

> > > Physical Therapy-Only when I have a flare up.

> > >

> > > Dermatologist-I still am searching for sane one but low

priority.

> > >

> > > Ok, I'm fine with those eleven and even seeing the

rheumatologist 3

> > > times a year for monitoring.

> > >

> > > I will probably see the transplant coordinator one more time

but

> > that

> > > will probably be that since I'm not a good candidate.

> > >

> > > But here is where its gone wild. Ok, pulmonologists and

> > rheumatologists

> > > decide before I have no autoimmune. I go to University of

Chicago.

> > They

> > > feel I probably have an underlying connective tissue disease

such as

> > > Undifferentiated Connective Tissue Disease or Polymyositis.

So, I

> > see

> > > rheumatologist here and he does more blood work. He sends me

to my

> > > neurologist, who says no sign of muscle disease and no need

for EMG.

> > > Rheumatologist finds nothing on which to diagnose a connective

> > tissue

> > > disease but sends me to another for second opinion. New

> > rheumatologist

> > > find nothing to indicate one and agrees with first who

disagreed

> > with U

> > > of Chicago pulmonology area. Now rheumatologist also wants me

to

> > seen

> > > second opinion neurologist (who actually is third opinion

because I

> > went

> > > to UTSW for second prior to ever being diagnosed with PF).

She's

> > the one

> > > now wanting to do the EMG.

> > >

> > > And all this to find out if I have something which is not

> > manifesting

> > > itself in any way other than perhaps the UIP, but very doubtful

> > there.

> > > Something that they feel I don't have but still want to check

more.

> > They

> > > can just do an autopsy when I'm gone as I'm about to call a

halt to

> > > their quest of infinite knowledge. One or two more

appointments is

> > my

> > > limit on this subject until some symptoms start impacting me.

> > >

> > > The other doctor I could do without seeing is my Oncologist.

Ok,

> > first

> > > referral for swollen lymph nodes made sense. But after 16 CT's

and

> > 16

> > > months and they haven't grown, they aren't cancer. But then

every

> > doctor

> > > wants something else checked. PTH is high so go there for

possible

> > > parathyroid cancer-negative. Faint Kappa on other test so go

there

> > for

> > > possible Myeloma. Not yet, going for follow up on test. God to

> > > dermatologist for skin biopsy. Dermatologist says don't need

one.

> > > Rheumatologist says talk about Sarcoid again to Pulmonologist.

> > > Pulmonologist says biopsies show none, not doing another

biopsy by

> > any

> > > means, and if I did have it what then, so he and I have no

interest

> > at

> > > the moment.

> > >

> > > Thoroughness has gone to the extreme. At one time I might have

cared

> > > about some remote possible disease not yet found. At this

point, if

> > I

> > > don't have real symptoms, if it isn't impairing my life, I no

longer

> > > feel such a need to know. I'm doing well and enjoying life

except

> > for

> > > too many doctors.

> > >

> > > They are officially on a timetable. They have one month to

finish

> > this

> > > crap and then they are on limits. Even these limits sound

> > ridiculously

> > > high but I know I have a lot of conditions so I can live with

them.

> > >

> > > 2009 Doctor visit limits-Primary 3 (assumes one non-routine),

> > > Pulmonologist 5 (assumes one non-routine), Gastroenterologist

1,

> > > Rheumatologist 3, Nephrologist 4, ENT 1, Opthalmologist 1,

> > Psychiatrist

> > > 2, Dermatologist 3, Physical Therapy (Only if have back

problems),

> > > Neurologist 1. Thats 24 plus 24 to my counselor and if they

want

> > more

> > > they'll just have to see someone else. lol.

> > >

> > > I think I'll just create a schedule and send it to them and

> > say.....this

> > > is when I'll be in. And they may not even get that many. I'm

leaving

> > > town, maybe the country. SGIO, I'm on my way....lol. I'll find

a

> > > pharmacy on the tropical island to refill my meds and I'm set.

No

> > new

> > > conditions allowed.

> > >

> >

>