Re: warning: high vent content

[Guest guest]

I sympathize with your frustration. You've probably told us, but could

you tell us again where you live? Also, where have you been seen--a neurologist

or just the PCP?

warning: high vent content

i have been learning to deal with this vertigo, these waves of dizziness,

this foggy-headed not-quite-awake feeling, and a slowly intensifying

headache that literally does laps around my head, for weeks now. and i have

made no secret of them, my doctor has been told about all of them.

last month, of course, they weren't so bad. when they began to worsen, i

called my doctor, left him a voicemail. when i got no response after a few

days, i called the doctor's offiice again, and learned that he was on

vacation. so i made an appointment for the next day to see an intern, which

proved to be a waste of money, since his remedy was to suggest a PFT test

with a pulmonologist. huh? really?

the doctor returns from vacation, calls me, and i let him know that my

symptoms are getting worse. we decide to go ahead with the brain MRI test,

seemed like the obvious choice, which i had done late last week. he was to

call back and let me know the results.

for the last five days these symptoms are back with a vengeance, & i'm

biting my nails & pacing the floor trying to be patient, but i can't do it.

i call the doctor's office to get information on what the MRI shows. instead

of getting the doctor's voicemail, i get a nurse, who tells me that my

doctor is on vacation. again. and he won't get any message that i leave

for him for at least a week.

i'll admit it, i kinda flipped on the phone, it really suddenly felt like i

was the only one taking this stuff seriously. i told the nurse i'm having

alot of problems getting thru my day, with all this going on in my head.

she said she'd have another doctor look at the MRI & give an opinion. the

nurse called back only 20 minutes later to tell me that this other mystery

doctor took a look and found it to be normal. at this point, the nurse

suggests that i let my doctor know what my concerns are when i come to the

office for my next appointment, which is scheduled two weeks from now.

really?

so i have a PCP on vacation, a mystery doctor who just glanced at my MRI,

and a nurse who wants me to show up in two weeks. $2500 out of my own

pocket for the MRI. of the four of us, which one of us is taking this

seriously?

so i told the nurse, again, my symptoms are really getting bad. after

consulting the mystery doctor again, it was determined that i should come

back into the doctor's office tomorrow, to see an intern.

i think that i would really like to have a specialist who knows sarcoidosis,

and who gives a krap, take a long, serious, legitimate look at that MRI. if

anyone knows whether or not such a person exists, please let me know.

that's not sarcasm, i'd really like to know. i want someone who knows what

they're doing to take a look at it.

a little heads-up for you folks: i may have more to say once i am done with

my next appointment with the intern, tomorrow afternoon.

but i'm done now, thanks please resume your normal activities.

chris

[Guest guest]

I don't remember (what else is new) if you ever told us where you live. There are people all over the place, and alot of them know really good sarc doctors. North Fl has one at Mayo, There is one in Tampa Florida, There is an awesome dr in Alabama. Someone know the name, for the life of me I can't remember - (help guys) I remember the jest of things, but not necessarily the details.

To: Neurosarcoidosis Sent: Wed, April 13, 2011 1:05:35 PMSubject: warning: high vent content

i have been learning to deal with this vertigo, these waves of dizziness, this foggy-headed not-quite-awake feeling, and a slowly intensifying headache that literally does laps around my head, for weeks now. and i have made no secret of them, my doctor has been told about all of them.

last month, of course, they weren't so bad. when they began to worsen, i called my doctor, left him a voicemail. when i got no response after a few days, i called the doctor's offiice again, and learned that he was on vacation. so i made an appointment for the next day to see an intern, which proved to be a waste of money, since his remedy was to suggest a PFT test with a pulmonologist. huh? really?

the doctor returns from vacation, calls me, and i let him know that my symptoms are getting worse. we decide to go ahead with the brain MRI test, seemed like the obvious choice, which i had done late last week. he was to call back and let me know the results.

for the last five days these symptoms are back with a vengeance, & i'm biting my nails & pacing the floor trying to be patient, but i can't do it. i call the doctor's office to get information on what the MRI shows. instead of getting the doctor's voicemail, i get a nurse, who tells me that my doctor is on vacation. again. and he won't get any message that i leave for him for at least a week.

i'll admit it, i kinda flipped on the phone, it really suddenly felt like i was the only one taking this stuff seriously. i told the nurse i'm having alot of problems getting thru my day, with all this going on in my head. she said she'd have another doctor look at the MRI & give an opinion. the nurse called back only 20 minutes later to tell me that this other mystery doctor took a look and found it to be normal. at this point, the nurse suggests that i let my doctor know what my concerns are when i come to the office for my next appointment, which is scheduled two weeks from now. really?

so i have a PCP on vacation, a mystery doctor who just glanced at my MRI, and a nurse who wants me to show up in two weeks. $2500 out of my own pocket for the MRI. of the four of us, which one of us is taking this seriously?

so i told the nurse, again, my symptoms are really getting bad. after consulting the mystery doctor again, it was determined that i should come back into the doctor's office tomorrow, to see an intern.

i think that i would really like to have a specialist who knows sarcoidosis, and who gives a krap, take a long, serious, legitimate look at that MRI. if anyone knows whether or not such a person exists, please let me know. that's not sarcasm, i'd really like to know. i want someone who knows what they're doing to take a look at it.

a little heads-up for you folks: i may have more to say once i am done with my next appointment with the intern, tomorrow afternoon.

but i'm done now, thanks please resume your normal activities.

chris

[Guest guest]

 

 

good morning folks, i've calmed down a bit now

 

i live in what we refer to as 'northern lower michigan' in a town about 2 hours north of Grand Rapids, or about 4-5 hour drive NW of Detroit.  Traverse City is the biggest city in our region, although that's not saying much, it's still kinda small.

 

i have not yet seen any neurologist, though i certainly think that doing so is warranted.  to provide a little background for you:  the job situation has been especially hard in Michigan in recent years, and i was unemployed more often than not for the last five years.  because of that, my doctors have taken it easy on me, not ordering tests that they would normally insist upon, in order to keep costs down for me.  now, i have a job, but it's a job that offers no health insurance, so i'm essentially in the same boat.  my PCP said he'd like me to start seeing a rheumatologist (there's only one in the whole town), which i did, a few weeks ago.  he's the one that pointed his finger at neurosarcoid as a cause for my new symptoms.  but during that same visit, he also made a point to say that he sees how i have not gotten alot of the tests normally called for, and that apparently made him nervous, because during that visit he told me flat out that he refuses to treat me until i get some tests done.  he said he'd provide the list of tests that he wants to my PCP.  even my PCP's jaw dropped when he saw the length of that list of tests.  the cost of those tests altogether is way over $10,000.  the first thing on that list was a brain MRI, which i got last week.  it'll take some time for me to get the rest of those tests, mainly because i'm still under-employed &  i barely earn enough money to stay afloat as it is.  ironically, though, i earn too much to qualify for any assistance programs offered by the hospital or other charitable organizations in my community.

 

normally, i would imagine a discussion would take place between my pcp and my rheumatologist, and maybe between the two of them they'd decide i should see a neurologist, or maybe my rheumatologist already thinks that i need to see one.  but with this guy refusing to treat me, and my pcp getting vacation-happy, that recommendation might not ever happen.  but i've begun a search for new doctors who know something about sarcoidosis.  performing that search jeopardizes my job, since i have to do it while i'm here at work - when i get home at the end of the day, i have an hour or so every day to do some packing so i can sell the house, before i have to go to bed to get my 11+ hours of sleep...

 

maybe, when i go to see the intern this afternoon, i can suggest involving a neurologist & slip him a $20 & see what happens   though right now i'd just settle for a little relief from this & $% & *$ & ! headache.

I don't remember (what else is new) if you ever told us where you live.  There are people all over the place, and alot of them know really good sarc doctors.  North Fl has one at Mayo, There is one in Tampa Florida, There is an awesome dr in Alabama.  Someone know the name, for the life of me I can't remember - (help guys) I remember the jest of things, but not necessarily the details. 

To: Neurosarcoidosis

Sent: Wed, April 13, 2011 1:05:35 PM Subject: warning: high vent content 

 

i have been learning to deal with this vertigo, these waves of dizziness, this foggy-headed not-quite-awake feeling, and a slowly intensifying headache that literally does laps around my head, for weeks now.  and i have made no secret of them, my doctor has been told about all of them.

 

last month, of course, they weren't so bad.  when they began to worsen, i called my doctor, left him a voicemail.  when i got no response after a few days, i called the doctor's offiice again, and learned that he was on vacation.  so i made an appointment for the next day to see an intern, which proved to be a waste of money, since his remedy was to suggest a PFT test with a pulmonologist.  huh?  really?

 

the doctor returns from vacation, calls me, and i let him know that my symptoms are getting worse.  we decide to go ahead with the brain MRI test, seemed like the obvious choice, which i had done late last week.  he was to call back and let me know the results.

 

for the last five days these symptoms are back with a vengeance, & i'm biting my nails & pacing the floor trying to be patient, but i can't do it.  i call the doctor's office to get information on what the MRI shows. instead of getting the doctor's voicemail, i get a nurse, who tells me that my doctor is on vacation.  again.  and he won't get any message that i leave for him for at least a week.

 

i'll admit it, i kinda flipped on the phone, it really suddenly felt like i was the only one taking this stuff seriously.  i told the nurse i'm having alot of problems getting thru my day, with all this going on in my head.  she said she'd have another doctor look at the MRI & give an opinion.  the nurse called back only 20 minutes later to tell me that this other mystery doctor took a look and found it to be normal.  at this point, the nurse suggests that i let my doctor know what my concerns are when i come to the office for my next appointment, which is scheduled two weeks from now.  really?

 

so i have a PCP on vacation, a mystery doctor who just glanced at my MRI, and a nurse who wants me to show up in two weeks.  $2500 out of my own pocket for the MRI.  of the four of us, which one of us is taking this seriously?

 

so i told the nurse, again, my symptoms are really getting bad.  after consulting the mystery doctor again, it was determined that i should come back into the doctor's office tomorrow, to see an intern.

 

i think that i would really like to have a specialist who knows sarcoidosis, and who gives a krap, take a long, serious, legitimate look at that MRI.  if anyone knows whether or not such a person exists, please let me know.  that's not sarcasm, i'd really like to know.  i want someone who knows what they're doing to take a look at it.

 

a little heads-up for you folks:  i may have more to say once i am done with my next appointment with the intern, tomorrow afternoon.

 

but i'm done now, thanks   please resume your normal activities.

 

chris

 

 

[Guest guest]

are you within reasonable distance of a major medical center? They not

only have all the specialists, but some will offer a sliding scale or some other

financial relief. I'm not impressed with this rheumy. Yeah, some tests really

are needed, but I want a doctor who has as much faith in his ability to get a

good history & do a thorough physical exam as in technology. I'm sure that being

a nurse-midwife gives me a little bias!

* warning: high vent content

>

>

>

>

> i have been learning to deal with this vertigo, these waves of

> dizziness, this foggy-headed not-quite-awake feeling, and a slowly

> intensifying headache that literally does laps around my head, for weeks

> now. and i have made no secret of them, my doctor has been told about all

> of them.

>

> last month, of course, they weren't so bad. when they began to worsen, i

> called my doctor, left him a voicemail. when i got no response after a few

> days, i called the doctor's offiice again, and learned that he was on

> vacation. so i made an appointment for the next day to see an intern, which

> proved to be a waste of money, since his remedy was to suggest a PFT test

> with a pulmonologist. huh? really?

>

> the doctor returns from vacation, calls me, and i let him know that my

> symptoms are getting worse. we decide to go ahead with the brain MRI test,

> seemed like the obvious choice, which i had done late last week. he was to

> call back and let me know the results.

>

> for the last five days these symptoms are back with a vengeance, & i'm

> biting my nails & pacing the floor trying to be patient, but i can't do it.

> i call the doctor's office to get information on what the MRI shows. instead

> of getting the doctor's voicemail, i get a nurse, who tells me that my

> doctor is on vacation. again. and he won't get any message that i leave

> for him for at least a week.

>

> i'll admit it, i kinda flipped on the phone, it really suddenly felt like i

> was the only one taking this stuff seriously. i told the nurse i'm having

> alot of problems getting thru my day, with all this going on in my head.

> she said she'd have another doctor look at the MRI & give an opinion. the

> nurse called back only 20 minutes later to tell me that this other mystery

> doctor took a look and found it to be normal. at this point, the nurse

> suggests that i let my doctor know what my concerns are when i come to the

> office for my next appointment, which is scheduled two weeks from now.

> really?

>

> so i have a PCP on vacation, a mystery doctor who just glanced at my MRI,

> and a nurse who wants me to show up in two weeks. $2500 out of my own

> pocket for the MRI. of the four of us, which one of us is taking this

> seriously?

>

> so i told the nurse, again, my symptoms are really getting bad. after

> consulting the mystery doctor again, it was determined that i should come

> back into the doctor's office tomorrow, to see an intern.

>

> i think that i would really like to have a specialist who knows

> sarcoidosis, and who gives a krap, take a long, serious, legitimate look at

> that MRI. if anyone knows whether or not such a person exists, please let

> me know. that's not sarcasm, i'd really like to know. i want someone who

> knows what they're doing to take a look at it.

>

> a little heads-up for you folks: i may have more to say once i am done

> with my next appointment with the intern, tomorrow afternoon.

>

> but i'm done now, thanks please resume your normal activities.

>

> chris

>

>

>

>

>

>

[Guest guest]

Chris

http://henryford.com/body.cfm?id=40925

Sarcoidosis

Henry Ford's Division of Pulmonary and Critical Care Medicine has a long history of excellence in the treatment of sarcoidosis as well as research into the causes of and new therapies for the disease. Our pulmonary specialists have the largest case experience in Michigan of caring for patients with sarcoidosis, and each year we treat more patients with sarcoidosis than any other lung center in Michigan. Because the disease often involves many organs of the body, the Henry Ford Sarcoidosis Multidisciplinary Clinic brings together specialists in pulmonary medicine, neurology, cardiology, and ophthalmology to help diagnose and manage the care of patients with multi-system sarcoidosis. Our team works to determine the extent of each patient's sarcoidosis and to manage the more complex situations such as involvement of the disease with the brain and/or heart.

Bowles, Alvin L. Sr. M.D. FACP PulmonaryHenry Ford Hospital 2799 West Grand BoulevardDetroit, Michigan 48202 Fax: Email:abowles1@... Burke, R. M.D., M.S.Pulmonary & Critical Care Medicine Henry Ford Hospital2799 West Grand BoulevardDetroit, Michigan 48202 Fax:

Samavati, Lobelia , MDPulmonary Critical Care MedicineDetroit Medical CenterWayne State UniversityHarper University HospitalOffice Address:3990 R 3# HudsonHarper University HospitalDetroit, MI. 48201 Fax: Ask if they have programs to help with people with non insurance. All they can say is no. Hope it helps, connie

To: Neurosarcoidosis Sent: Thu, April 14, 2011 8:45:51 AMSubject: Re: warning: high vent content

good morning folks, i've calmed down a bit now

i live in what we refer to as 'northern lower michigan' in a town about 2 hours north of Grand Rapids, or about 4-5 hour drive NW of Detroit. Traverse City is the biggest city in our region, although that's not saying much, it's still kinda small.

i have not yet seen any neurologist, though i certainly think that doing so is warranted. to provide a little background for you: the job situation has been especially hard in Michigan in recent years, and i was unemployed more often than not for the last five years. because of that, my doctors have taken it easy on me, not ordering tests that they would normally insist upon, in order to keep costs down for me. now, i have a job, but it's a job that offers no health insurance, so i'm essentially in the same boat. my PCP said he'd like me to start seeing a rheumatologist (there's only one in the whole town), which i did, a few weeks ago. he's the one that pointed his finger at neurosarcoid as a cause for my new symptoms. but during that same visit, he also made a point to say that he sees how i have not gotten alot of the tests normally called for, and that apparently made him nervous, because during that

visit he told me flat out that he refuses to treat me until i get some tests done. he said he'd provide the list of tests that he wants to my PCP. even my PCP's jaw dropped when he saw the length of that list of tests. the cost of those tests altogether is way over $10,000. the first thing on that list was a brain MRI, which i got last week. it'll take some time for me to get the rest of those tests, mainly because i'm still under-employed & i barely earn enough money to stay afloat as it is. ironically, though, i earn too much to qualify for any assistance programs offered by the hospital or other charitable organizations in my community.

normally, i would imagine a discussion would take place between my pcp and my rheumatologist, and maybe between the two of them they'd decide i should see a neurologist, or maybe my rheumatologist already thinks that i need to see one. but with this guy refusing to treat me, and my pcp getting vacation-happy, that recommendation might not ever happen. but i've begun a search for new doctors who know something about sarcoidosis. performing that search jeopardizes my job, since i have to do it while i'm here at work - when i get home at the end of the day, i have an hour or so every day to do some packing so i can sell the house, before i have to go to bed to get my 11+ hours of sleep...

maybe, when i go to see the intern this afternoon, i can suggest involving a neurologist & slip him a $20 & see what happens though right now i'd just settle for a little relief from this & $% & *$ & ! headache.

I don't remember (what else is new) if you ever told us where you live. There are people all over the place, and alot of them know really good sarc doctors. North Fl has one at Mayo, There is one in Tampa Florida, There is an awesome dr in Alabama. Someone know the name, for the life of me I can't remember - (help guys) I remember the jest of things, but not necessarily the details.

To: Neurosarcoidosis Sent: Wed, April 13, 2011 1:05:35 PM Subject: warning: high vent content

i have been learning to deal with this vertigo, these waves of dizziness, this foggy-headed not-quite-awake feeling, and a slowly intensifying headache that literally does laps around my head, for weeks now. and i have made no secret of them, my doctor has been told about all of them.

last month, of course, they weren't so bad. when they began to worsen, i called my doctor, left him a voicemail. when i got no response after a few days, i called the doctor's offiice again, and learned that he was on vacation. so i made an appointment for the next day to see an intern, which proved to be a waste of money, since his remedy was to suggest a PFT test with a pulmonologist. huh? really?

the doctor returns from vacation, calls me, and i let him know that my symptoms are getting worse. we decide to go ahead with the brain MRI test, seemed like the obvious choice, which i had done late last week. he was to call back and let me know the results.

for the last five days these symptoms are back with a vengeance, & i'm biting my nails & pacing the floor trying to be patient, but i can't do it. i call the doctor's office to get information on what the MRI shows. instead of getting the doctor's voicemail, i get a nurse, who tells me that my doctor is on vacation. again. and he won't get any message that i leave for him for at least a week.

i'll admit it, i kinda flipped on the phone, it really suddenly felt like i was the only one taking this stuff seriously. i told the nurse i'm having alot of problems getting thru my day, with all this going on in my head. she said she'd have another doctor look at the MRI & give an opinion. the nurse called back only 20 minutes later to tell me that this other mystery doctor took a look and found it to be normal. at this point, the nurse suggests that i let my doctor know what my concerns are when i come to the office for my next appointment, which is scheduled two weeks from now. really?

so i have a PCP on vacation, a mystery doctor who just glanced at my MRI, and a nurse who wants me to show up in two weeks. $2500 out of my own pocket for the MRI. of the four of us, which one of us is taking this seriously?

so i told the nurse, again, my symptoms are really getting bad. after consulting the mystery doctor again, it was determined that i should come back into the doctor's office tomorrow, to see an intern.

i think that i would really like to have a specialist who knows sarcoidosis, and who gives a krap, take a long, serious, legitimate look at that MRI. if anyone knows whether or not such a person exists, please let me know. that's not sarcasm, i'd really like to know. i want someone who knows what they're doing to take a look at it.

a little heads-up for you folks: i may have more to say once i am done with my next appointment with the intern, tomorrow afternoon.

but i'm done now, thanks please resume your normal activities.

chris

[Guest guest]

Wow, Connie! This is why I say you are such a great resource person. I wonder if your co-workers realize what a treasure they have in that office?

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: conaugusta@...Date: Thu, 14 Apr 2011 17:35:00 -0700Subject: Re: warning: high vent content

Chris

http://henryford.com/body.cfm?id=40925

Sarcoidosis

Henry Ford's Division of Pulmonary and Critical Care Medicine has a long history of excellence in the treatment of sarcoidosis as well as research into the causes of and new therapies for the disease. Our pulmonary specialists have the largest case experience in Michigan of caring for patients with sarcoidosis, and each year we treat more patients with sarcoidosis than any other lung center in Michigan. Because the disease often involves many organs of the body, the Henry Ford Sarcoidosis Multidisciplinary Clinic brings together specialists in pulmonary medicine, neurology, cardiology, and ophthalmology to help diagnose and manage the care of patients with multi-system sarcoidosis. Our team works to determine the extent of each patient's sarcoidosis and to manage the more complex situations such as involvement of the disease with the brain and/or heart.

Bowles, Alvin L. Sr. M.D. FACP PulmonaryHenry Ford Hospital 2799 West Grand BoulevardDetroit, Michigan 48202 Fax: Email:abowles1@... Burke, R. M.D., M.S.Pulmonary & Critical Care Medicine Henry Ford Hospital2799 West Grand BoulevardDetroit, Michigan 48202 Fax:

Samavati, Lobelia , MDPulmonary Critical Care MedicineDetroit Medical CenterWayne State UniversityHarper University HospitalOffice Address:3990 R 3# HudsonHarper University HospitalDetroit, MI. 48201 Fax: Ask if they have programs to help with people with non insurance. All they can say is no. Hope it helps, connie

To: Neurosarcoidosis Sent: Thu, April 14, 2011 8:45:51 AMSubject: Re: warning: high vent content

good morning folks, i've calmed down a bit now

i live in what we refer to as 'northern lower michigan' in a town about 2 hours north of Grand Rapids, or about 4-5 hour drive NW of Detroit. Traverse City is the biggest city in our region, although that's not saying much, it's still kinda small.

i have not yet seen any neurologist, though i certainly think that doing so is warranted. to provide a little background for you: the job situation has been especially hard in Michigan in recent years, and i was unemployed more often than not for the last five years. because of that, my doctors have taken it easy on me, not ordering tests that they would normally insist upon, in order to keep costs down for me. now, i have a job, but it's a job that offers no health insurance, so i'm essentially in the same boat. my PCP said he'd like me to start seeing a rheumatologist (there's only one in the whole town), which i did, a few weeks ago. he's the one that pointed his finger at neurosarcoid as a cause for my new symptoms. but during that same visit, he also made a point to say that he sees how i have not gotten alot of the tests normally called for, and that apparently made him nervous, because during that visit he told me flat out that he refuses to treat me until i get some tests done. he said he'd provide the list of tests that he wants to my PCP. even my PCP's jaw dropped when he saw the length of that list of tests. the cost of those tests altogether is way over $10,000. the first thing on that list was a brain MRI, which i got last week. it'll take some time for me to get the rest of those tests, mainly because i'm still under-employed & i barely earn enough money to stay afloat as it is. ironically, though, i earn too much to qualify for any assistance programs offered by the hospital or other charitable organizations in my community.

normally, i would imagine a discussion would take place between my pcp and my rheumatologist, and maybe between the two of them they'd decide i should see a neurologist, or maybe my rheumatologist already thinks that i need to see one. but with this guy refusing to treat me, and my pcp getting vacation-happy, that recommendation might not ever happen. but i've begun a search for new doctors who know something about sarcoidosis. performing that search jeopardizes my job, since i have to do it while i'm here at work - when i get home at the end of the day, i have an hour or so every day to do some packing so i can sell the house, before i have to go to bed to get my 11+ hours of sleep...

maybe, when i go to see the intern this afternoon, i can suggest involving a neurologist & slip him a $20 & see what happens though right now i'd just settle for a little relief from this & $% & *$ & ! headache.

I don't remember (what else is new) if you ever told us where you live. There are people all over the place, and alot of them know really good sarc doctors. North Fl has one at Mayo, There is one in Tampa Florida, There is an awesome dr in Alabama. Someone know the name, for the life of me I can't remember - (help guys) I remember the jest of things, but not necessarily the details.

To: Neurosarcoidosis Sent: Wed, April 13, 2011 1:05:35 PM Subject: warning: high vent content

i have been learning to deal with this vertigo, these waves of dizziness, this foggy-headed not-quite-awake feeling, and a slowly intensifying headache that literally does laps around my head, for weeks now. and i have made no secret of them, my doctor has been told about all of them.

last month, of course, they weren't so bad. when they began to worsen, i called my doctor, left him a voicemail. when i got no response after a few days, i called the doctor's offiice again, and learned that he was on vacation. so i made an appointment for the next day to see an intern, which proved to be a waste of money, since his remedy was to suggest a PFT test with a pulmonologist. huh? really?

the doctor returns from vacation, calls me, and i let him know that my symptoms are getting worse. we decide to go ahead with the brain MRI test, seemed like the obvious choice, which i had done late last week. he was to call back and let me know the results.

for the last five days these symptoms are back with a vengeance, & i'm biting my nails & pacing the floor trying to be patient, but i can't do it. i call the doctor's office to get information on what the MRI shows. instead of getting the doctor's voicemail, i get a nurse, who tells me that my doctor is on vacation. again. and he won't get any message that i leave for him for at least a week.

i'll admit it, i kinda flipped on the phone, it really suddenly felt like i was the only one taking this stuff seriously. i told the nurse i'm having alot of problems getting thru my day, with all this going on in my head. she said she'd have another doctor look at the MRI & give an opinion. the nurse called back only 20 minutes later to tell me that this other mystery doctor took a look and found it to be normal. at this point, the nurse suggests that i let my doctor know what my concerns are when i come to the office for my next appointment, which is scheduled two weeks from now. really?

so i have a PCP on vacation, a mystery doctor who just glanced at my MRI, and a nurse who wants me to show up in two weeks. $2500 out of my own pocket for the MRI. of the four of us, which one of us is taking this seriously?

so i told the nurse, again, my symptoms are really getting bad. after consulting the mystery doctor again, it was determined that i should come back into the doctor's office tomorrow, to see an intern.

i think that i would really like to have a specialist who knows sarcoidosis, and who gives a krap, take a long, serious, legitimate look at that MRI. if anyone knows whether or not such a person exists, please let me know. that's not sarcasm, i'd really like to know. i want someone who knows what they're doing to take a look at it.

a little heads-up for you folks: i may have more to say once i am done with my next appointment with the intern, tomorrow afternoon.

but i'm done now, thanks please resume your normal activities.

chris

[Guest guest]

Wow, Connie! This is why I say you are such a great resource person. I wonder if your co-workers realize what a treasure they have in that office?

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: conaugusta@...Date: Thu, 14 Apr 2011 17:35:00 -0700Subject: Re: warning: high vent content

Chris

http://henryford.com/body.cfm?id=40925

Sarcoidosis

Henry Ford's Division of Pulmonary and Critical Care Medicine has a long history of excellence in the treatment of sarcoidosis as well as research into the causes of and new therapies for the disease. Our pulmonary specialists have the largest case experience in Michigan of caring for patients with sarcoidosis, and each year we treat more patients with sarcoidosis than any other lung center in Michigan. Because the disease often involves many organs of the body, the Henry Ford Sarcoidosis Multidisciplinary Clinic brings together specialists in pulmonary medicine, neurology, cardiology, and ophthalmology to help diagnose and manage the care of patients with multi-system sarcoidosis. Our team works to determine the extent of each patient's sarcoidosis and to manage the more complex situations such as involvement of the disease with the brain and/or heart.

Bowles, Alvin L. Sr. M.D. FACP PulmonaryHenry Ford Hospital 2799 West Grand BoulevardDetroit, Michigan 48202 Fax: Email:abowles1@... Burke, R. M.D., M.S.Pulmonary & Critical Care Medicine Henry Ford Hospital2799 West Grand BoulevardDetroit, Michigan 48202 Fax:

Samavati, Lobelia , MDPulmonary Critical Care MedicineDetroit Medical CenterWayne State UniversityHarper University HospitalOffice Address:3990 R 3# HudsonHarper University HospitalDetroit, MI. 48201 Fax: Ask if they have programs to help with people with non insurance. All they can say is no. Hope it helps, connie

To: Neurosarcoidosis Sent: Thu, April 14, 2011 8:45:51 AMSubject: Re: warning: high vent content

good morning folks, i've calmed down a bit now

i live in what we refer to as 'northern lower michigan' in a town about 2 hours north of Grand Rapids, or about 4-5 hour drive NW of Detroit. Traverse City is the biggest city in our region, although that's not saying much, it's still kinda small.

i have not yet seen any neurologist, though i certainly think that doing so is warranted. to provide a little background for you: the job situation has been especially hard in Michigan in recent years, and i was unemployed more often than not for the last five years. because of that, my doctors have taken it easy on me, not ordering tests that they would normally insist upon, in order to keep costs down for me. now, i have a job, but it's a job that offers no health insurance, so i'm essentially in the same boat. my PCP said he'd like me to start seeing a rheumatologist (there's only one in the whole town), which i did, a few weeks ago. he's the one that pointed his finger at neurosarcoid as a cause for my new symptoms. but during that same visit, he also made a point to say that he sees how i have not gotten alot of the tests normally called for, and that apparently made him nervous, because during that visit he told me flat out that he refuses to treat me until i get some tests done. he said he'd provide the list of tests that he wants to my PCP. even my PCP's jaw dropped when he saw the length of that list of tests. the cost of those tests altogether is way over $10,000. the first thing on that list was a brain MRI, which i got last week. it'll take some time for me to get the rest of those tests, mainly because i'm still under-employed & i barely earn enough money to stay afloat as it is. ironically, though, i earn too much to qualify for any assistance programs offered by the hospital or other charitable organizations in my community.

normally, i would imagine a discussion would take place between my pcp and my rheumatologist, and maybe between the two of them they'd decide i should see a neurologist, or maybe my rheumatologist already thinks that i need to see one. but with this guy refusing to treat me, and my pcp getting vacation-happy, that recommendation might not ever happen. but i've begun a search for new doctors who know something about sarcoidosis. performing that search jeopardizes my job, since i have to do it while i'm here at work - when i get home at the end of the day, i have an hour or so every day to do some packing so i can sell the house, before i have to go to bed to get my 11+ hours of sleep...

maybe, when i go to see the intern this afternoon, i can suggest involving a neurologist & slip him a $20 & see what happens though right now i'd just settle for a little relief from this & $% & *$ & ! headache.

I don't remember (what else is new) if you ever told us where you live. There are people all over the place, and alot of them know really good sarc doctors. North Fl has one at Mayo, There is one in Tampa Florida, There is an awesome dr in Alabama. Someone know the name, for the life of me I can't remember - (help guys) I remember the jest of things, but not necessarily the details.

To: Neurosarcoidosis Sent: Wed, April 13, 2011 1:05:35 PM Subject: warning: high vent content

i have been learning to deal with this vertigo, these waves of dizziness, this foggy-headed not-quite-awake feeling, and a slowly intensifying headache that literally does laps around my head, for weeks now. and i have made no secret of them, my doctor has been told about all of them.

last month, of course, they weren't so bad. when they began to worsen, i called my doctor, left him a voicemail. when i got no response after a few days, i called the doctor's offiice again, and learned that he was on vacation. so i made an appointment for the next day to see an intern, which proved to be a waste of money, since his remedy was to suggest a PFT test with a pulmonologist. huh? really?

the doctor returns from vacation, calls me, and i let him know that my symptoms are getting worse. we decide to go ahead with the brain MRI test, seemed like the obvious choice, which i had done late last week. he was to call back and let me know the results.

for the last five days these symptoms are back with a vengeance, & i'm biting my nails & pacing the floor trying to be patient, but i can't do it. i call the doctor's office to get information on what the MRI shows. instead of getting the doctor's voicemail, i get a nurse, who tells me that my doctor is on vacation. again. and he won't get any message that i leave for him for at least a week.

i'll admit it, i kinda flipped on the phone, it really suddenly felt like i was the only one taking this stuff seriously. i told the nurse i'm having alot of problems getting thru my day, with all this going on in my head. she said she'd have another doctor look at the MRI & give an opinion. the nurse called back only 20 minutes later to tell me that this other mystery doctor took a look and found it to be normal. at this point, the nurse suggests that i let my doctor know what my concerns are when i come to the office for my next appointment, which is scheduled two weeks from now. really?

so i have a PCP on vacation, a mystery doctor who just glanced at my MRI, and a nurse who wants me to show up in two weeks. $2500 out of my own pocket for the MRI. of the four of us, which one of us is taking this seriously?

so i told the nurse, again, my symptoms are really getting bad. after consulting the mystery doctor again, it was determined that i should come back into the doctor's office tomorrow, to see an intern.

i think that i would really like to have a specialist who knows sarcoidosis, and who gives a krap, take a long, serious, legitimate look at that MRI. if anyone knows whether or not such a person exists, please let me know. that's not sarcasm, i'd really like to know. i want someone who knows what they're doing to take a look at it.

a little heads-up for you folks: i may have more to say once i am done with my next appointment with the intern, tomorrow afternoon.

but i'm done now, thanks please resume your normal activities.

chris

[Guest guest]

 

good morning & thanks to everyone for their helpful replies!

 

things didn't go badly yesteday with the new intern, this kid exhibited signs of intelligence & will probably go far in his career, i didn't mind spending time with him.  he gave me a prescription for just a half dozen Imitrex for my headache to see if it'll help.  i can see that i'll be visiting needymeds.org soon if this stuff ends up helping me, because these six pills cost about $15 each!  and that's with my Rite-Aid discount card.

 

we discussed symptoms new & old, and as a result, arrangements are being made for me to see a neurologist.  woohoo!

 

Connie, that's a great tip on the Henry Ford center.  i'm gonna look into that some more today.  i have had the itch to take a road trip lately anyway & have been looking for an excuse to go to Detroit  

 

the intern determined that i shouldn't drive, with all my dizziness, so i had to catch a ride to work today, which meant getting up early, & so i'm at the office early & falling asleep at my keyboard.  i miss my car already!

 

Chris

 

http://henryford.com/body.cfm?id=40925

Sarcoidosis

Henry Ford's Division of Pulmonary and Critical Care Medicine has a long history of excellence in the treatment of sarcoidosis as well as research into the causes of and new therapies for the disease.

[Guest guest]

I'm just curious; where are seeing the intern? I had assumed that it was an internist you were seeing until this last message, which I read more carefully. I ask because I had suggested you look into a medical center & wondered if you were already being seen there.

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: skugger1@...Date: Fri, 15 Apr 2011 08:04:15 -0400Subject: Re: warning: high vent content

good morning & thanks to everyone for their helpful replies!

things didn't go badly yesteday with the new intern, this kid exhibited signs of intelligence & will probably go far in his career, i didn't mind spending time with him. he gave me a prescription for just a half dozen Imitrex for my headache to see if it'll help. i can see that i'll be visiting needymeds.org soon if this stuff ends up helping me, because these six pills cost about $15 each! and that's with my Rite-Aid discount card.

we discussed symptoms new & old, and as a result, arrangements are being made for me to see a neurologist. woohoo!

Connie, that's a great tip on the Henry Ford center. i'm gonna look into that some more today. i have had the itch to take a road trip lately anyway & have been looking for an excuse to go to Detroit

the intern determined that i shouldn't drive, with all my dizziness, so i had to catch a ride to work today, which meant getting up early, & so i'm at the office early & falling asleep at my keyboard. i miss my car already!

Chris

http://henryford.com/body.cfm?id=40925

Sarcoidosis

Henry Ford's Division of Pulmonary and Critical Care Medicine has a long history of excellence in the treatment of sarcoidosis as well as research into the causes of and new therapies for the disease.

[Guest guest]

 

hi Rose

 

i'm seeing the intern(s), not internists, at my PCP's office.  apparently, the office is full of them, as i'm finding out the hard way.  it appears that, when you need medical attention from your PCP but he's on vacation for the 2nd time in 3 weeks, you get to see a doctor who literally graduated from school during this calendar year.  i've now had three of them thrust upon me.

 

the events of yesterday, dealing with these people & trying to get some valid, legitimate help, were just as bad as the day before.  i've been venting and ranting alot on this list lately so i'll spare everyone from my tirade.   i'm considering filing a complaint with the state board of health, regarding my rheumatologist.

 

i don't live close to any large medical centers.  our medical center here in town is the largest for 100 miles in any direction, but that's not necessarily saying much.  i have been trying to do some searching & investigating into other medical centers, in larger cities where they actually practice legitimate modern medicine & doctors don't wear warpaint or have chicken bones through their nose.  in order to be fair to my employer, i can only spend so much time during my work day with internet searches & making phone calls before i have to get back to work, so it's slow going.  gotta keep my job or i'm done for.

 

i'm heading out this morning to get some blood work done, i may be able to do some google-ing later today, although i'm at the mercy of relatives and public transportation today, and i can already tell this morning that my headache & dizziness will be paying another visit very soon this morning.  i hope i can get back home before my head decides it's time to go back to bed.

 

hopefully tomorrow will look better, but today, i'm really near end of my rope with all of this.

 

chris

 

I'm just curious; where are seeing the intern?  I had assumed that it was an internist you were seeing until this last message, which I read more carefully.  I ask because I had suggested you look into a medical center & wondered if you were already being seen there.

Ramblin' RoseCo-owner/Moderator

  " I child-proofed my home and they STILL get in! "      (Bumper sticker)

[Guest guest]

I'm so sorry that you are going thru all this. It's bad enough to have a

serious chronic illness without having to educate your health care providers,

battle insurance companies (or if you don't have ins, try to find a way to pay

for care, decide which tests are going to give you the most bang for your buck,

etc.). It's a double whammy that sarcoidosis causes such extreme fatigue, and

then you're expected to use what little energy you have to navigate the health

care system, usually with doctors who don't have a clue about the fatigue, don't

believe it, or don't care. I was extremely fortunate to have very good ibsurance

when I met the sarc monster, AND to have compassionate providers with open

minds. Well, I hope the info that Connie provided will be helpful. Know

that you have dozens, if not hundreds, of folks who understand your situation &

keep you in their thoughts & prayers. Many of our members seldom post, but they

read the messages.

Re: warning: high vent content

hi Rose

i'm seeing the intern(s), not internists, at my PCP's office. apparently,

the office is full of them, as i'm finding out the hard way. it appears

that, when you need medical attention from your PCP but he's on vacation for

the 2nd time in 3 weeks, you get to see a doctor who literally graduated

from school during this calendar year. i've now had three of them thrust

upon me.

the events of yesterday, dealing with these people & trying to get some

valid, legitimate help, were just as bad as the day before. i've been

venting and ranting alot on this list lately so i'll spare everyone from my

tirade. i'm considering filing a complaint with the state board of health,

regarding my rheumatologist.

i don't live close to any large medical centers. our medical center here in

town is the largest for 100 miles in any direction, but that's not

necessarily saying much. i have been trying to do some searching &

investigating into other medical centers, in larger cities where they

actually practice legitimate modern medicine & doctors don't wear

warpaint or have chicken bones through their nose. in order to be fair to

my employer, i can only spend so much time during my work day with internet

searches & making phone calls before i have to get back to work, so it's

slow going. gotta keep my job or i'm done for.

i'm heading out this morning to get some blood work done, i may be able to

do some google-ing later today, although i'm at the mercy of relatives and

public transportation today, and i can already tell this morning that my

headache & dizziness will be paying another visit very soon this morning. i

hope i can get back home before my head decides it's time to go back to bed.

hopefully tomorrow will look better, but today, i'm really near end of my

rope with all of this.

chris

>

>

> I'm just curious; where are seeing the intern? I had assumed that it was

> an internist you were seeing until this last message, which I read more

> carefully. I ask because I had suggested you look into a medical center &

> wondered if you were already being seen there.

>

> *Ramblin' Rose*

> *Co-owner/Moderator*

> **

> " I child-proofed my home and they STILL get in! " (Bumper sticker)

>

>

>

[Guest guest]

Thanks Rose I learned from the best my sarc friends

To: neurosarcoidosis Sent: Thu, April 14, 2011 11:31:10 PMSubject: RE: warning: high vent content

Wow, Connie! This is why I say you are such a great resource person. I wonder if your co-workers realize what a treasure they have in that office?

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: conaugusta@...Date: Thu, 14 Apr 2011 17:35:00 -0700Subject: Re: warning: high vent content

Chris

http://henryford.com/body.cfm?id=40925

SarcoidosisHenry Ford's Division of Pulmonary and Critical Care Medicine has a long history of excellence in the treatment of sarcoidosis as well as research into the causes of and new therapies for the disease. Our pulmonary specialists have the largest case experience in Michigan of caring for patients with sarcoidosis, and each year we treat more patients with sarcoidosis than any other lung center in Michigan. Because the disease often involves many organs of the body, the Henry Ford Sarcoidosis Multidisciplinary Clinic brings together specialists in pulmonary medicine, neurology, cardiology, and ophthalmology to help diagnose and manage the care of patients with multi-system sarcoidosis. Our team works to determine the extent of each patient's sarcoidosis and to manage the more complex situations such as involvement of the disease with the brain and/or heart. Bowles, Alvin L. Sr. M.D.

FACP PulmonaryHenry Ford Hospital 2799 West Grand BoulevardDetroit, Michigan 48202 Fax: Email:abowles1@... Burke, R. M.D., M.S.Pulmonary & Critical Care Medicine Henry Ford Hospital2799 West Grand BoulevardDetroit, Michigan 48202 Fax: Samavati, Lobelia , MDPulmonary Critical Care MedicineDetroit Medical CenterWayne State UniversityHarper University HospitalOffice Address:3990 R 3# HudsonHarper University HospitalDetroit, MI. 48201 Fax: Ask if they have programs to help with people with non

insurance. All they can say is no. Hope it helps, connie

To: Neurosarcoidosis Sent: Thu, April 14, 2011 8:45:51 AMSubject: Re: warning: high vent content

good morning folks, i've calmed down a bit now

i live in what we refer to as 'northern lower michigan' in a town about 2 hours north of Grand Rapids, or about 4-5 hour drive NW of Detroit. Traverse City is the biggest city in our region, although that's not saying much, it's still kinda small.

i have not yet seen any neurologist, though i certainly think that doing so is warranted. to provide a little background for you: the job situation has been especially hard in Michigan in recent years, and i was unemployed more often than not for the last five years. because of that, my doctors have taken it easy on me, not ordering tests that they would normally insist upon, in order to keep costs down for me. now, i have a job, but it's a job that offers no health insurance, so i'm essentially in the same boat. my PCP said he'd like me to start seeing a rheumatologist (there's only one in the whole town), which i did, a few weeks ago. he's the one that pointed his finger at neurosarcoid as a cause for my new symptoms. but during that same visit, he also made a point to say that he sees how i have not gotten alot of the tests normally called for, and that apparently made him nervous, because during that

visit he told me flat out that he refuses to treat me until i get some tests done. he said he'd provide the list of tests that he wants to my PCP. even my PCP's jaw dropped when he saw the length of that list of tests. the cost of those tests altogether is way over $10,000. the first thing on that list was a brain MRI, which i got last week. it'll take some time for me to get the rest of those tests, mainly because i'm still under-employed & i barely earn enough money to stay afloat as it is. ironically, though, i earn too much to qualify for any assistance programs offered by the hospital or other charitable organizations in my community.

normally, i would imagine a discussion would take place between my pcp and my rheumatologist, and maybe between the two of them they'd decide i should see a neurologist, or maybe my rheumatologist already thinks that i need to see one. but with this guy refusing to treat me, and my pcp getting vacation-happy, that recommendation might not ever happen. but i've begun a search for new doctors who know something about sarcoidosis. performing that search jeopardizes my job, since i have to do it while i'm here at work - when i get home at the end of the day, i have an hour or so every day to do some packing so i can sell the house, before i have to go to bed to get my 11+ hours of sleep...

maybe, when i go to see the intern this afternoon, i can suggest involving a neurologist & slip him a $20 & see what happens though right now i'd just settle for a little relief from this & $% & *$ & ! headache.

I don't remember (what else is new) if you ever told us where you live. There are people all over the place, and alot of them know really good sarc doctors. North Fl has one at Mayo, There is one in Tampa Florida, There is an awesome dr in Alabama. Someone know the name, for the life of me I can't remember - (help guys) I remember the jest of things, but not necessarily the details.

To: Neurosarcoidosis Sent: Wed, April 13, 2011 1:05:35 PM Subject: warning: high vent content

i have been learning to deal with this vertigo, these waves of dizziness, this foggy-headed not-quite-awake feeling, and a slowly intensifying headache that literally does laps around my head, for weeks now. and i have made no secret of them, my doctor has been told about all of them.

last month, of course, they weren't so bad. when they began to worsen, i called my doctor, left him a voicemail. when i got no response after a few days, i called the doctor's offiice again, and learned that he was on vacation. so i made an appointment for the next day to see an intern, which proved to be a waste of money, since his remedy was to suggest a PFT test with a pulmonologist. huh? really?

the doctor returns from vacation, calls me, and i let him know that my symptoms are getting worse. we decide to go ahead with the brain MRI test, seemed like the obvious choice, which i had done late last week. he was to call back and let me know the results.

for the last five days these symptoms are back with a vengeance, & i'm biting my nails & pacing the floor trying to be patient, but i can't do it. i call the doctor's office to get information on what the MRI shows. instead of getting the doctor's voicemail, i get a nurse, who tells me that my doctor is on vacation. again. and he won't get any message that i leave for him for at least a week.

i'll admit it, i kinda flipped on the phone, it really suddenly felt like i was the only one taking this stuff seriously. i told the nurse i'm having alot of problems getting thru my day, with all this going on in my head. she said she'd have another doctor look at the MRI & give an opinion. the nurse called back only 20 minutes later to tell me that this other mystery doctor took a look and found it to be normal. at this point, the nurse suggests that i let my doctor know what my concerns are when i come to the office for my next appointment, which is scheduled two weeks from now. really?

so i have a PCP on vacation, a mystery doctor who just glanced at my MRI, and a nurse who wants me to show up in two weeks. $2500 out of my own pocket for the MRI. of the four of us, which one of us is taking this seriously?

so i told the nurse, again, my symptoms are really getting bad. after consulting the mystery doctor again, it was determined that i should come back into the doctor's office tomorrow, to see an intern.

i think that i would really like to have a specialist who knows sarcoidosis, and who gives a krap, take a long, serious, legitimate look at that MRI. if anyone knows whether or not such a person exists, please let me know. that's not sarcasm, i'd really like to know. i want someone who knows what they're doing to take a look at it.

a little heads-up for you folks: i may have more to say once i am done with my next appointment with the intern, tomorrow afternoon.

but i'm done now, thanks please resume your normal activities.

chris

[Guest guest]

Your welcome, I didn't mess up the town did I, I thought you said you were near Detroit, but with my "nasty little friend" messing with my synapsis I never know. Glad things went better with the intern, and yes NeedyMeds.Org covers Immitrex, even the injectable kind which is 300.00/mth. When I worked at Voc Rehab I used to have it sent to one of the clients. (No charge at that time)

To: Neurosarcoidosis Sent: Fri, April 15, 2011 8:04:15 AMSubject: Re: warning: high vent content

good morning & thanks to everyone for their helpful replies!

things didn't go badly yesteday with the new intern, this kid exhibited signs of intelligence & will probably go far in his career, i didn't mind spending time with him. he gave me a prescription for just a half dozen Imitrex for my headache to see if it'll help. i can see that i'll be visiting needymeds.org soon if this stuff ends up helping me, because these six pills cost about $15 each! and that's with my Rite-Aid discount card.

we discussed symptoms new & old, and as a result, arrangements are being made for me to see a neurologist. woohoo!

Connie, that's a great tip on the Henry Ford center. i'm gonna look into that some more today. i have had the itch to take a road trip lately anyway & have been looking for an excuse to go to Detroit

the intern determined that i shouldn't drive, with all my dizziness, so i had to catch a ride to work today, which meant getting up early, & so i'm at the office early & falling asleep at my keyboard. i miss my car already!

Chris

http://henryford.com/body.cfm?id=40925

Sarcoidosis

Henry Ford's Division of Pulmonary and Critical Care Medicine has a long history of excellence in the treatment of sarcoidosis as well as research into the causes of and new therapies for the disease.

[Guest guest]

if you will give me particulars on what you want/need to know. My computer is at home and I would be glad to do the research for you. connie

To: Neurosarcoidosis Sent: Sat, April 16, 2011 11:00:05 AMSubject: Re: warning: high vent content

hi Rose

i'm seeing the intern(s), not internists, at my PCP's office. apparently, the office is full of them, as i'm finding out the hard way. it appears that, when you need medical attention from your PCP but he's on vacation for the 2nd time in 3 weeks, you get to see a doctor who literally graduated from school during this calendar year. i've now had three of them thrust upon me.

the events of yesterday, dealing with these people & trying to get some valid, legitimate help, were just as bad as the day before. i've been venting and ranting alot on this list lately so i'll spare everyone from my tirade. i'm considering filing a complaint with the state board of health, regarding my rheumatologist.

i don't live close to any large medical centers. our medical center here in town is the largest for 100 miles in any direction, but that's not necessarily saying much. i have been trying to do some searching & investigating into other medical centers, in larger cities where they actually practice legitimate modern medicine & doctors don't wear warpaint or have chicken bones through their nose. in order to be fair to my employer, i can only spend so much time during my work day with internet searches & making phone calls before i have to get back to work, so it's slow going. gotta keep my job or i'm done for.

i'm heading out this morning to get some blood work done, i may be able to do some google-ing later today, although i'm at the mercy of relatives and public transportation today, and i can already tell this morning that my headache & dizziness will be paying another visit very soon this morning. i hope i can get back home before my head decides it's time to go back to bed.

hopefully tomorrow will look better, but today, i'm really near end of my rope with all of this.

chris

I'm just curious; where are seeing the intern? I had assumed that it was an internist you were seeing until this last message, which I read more carefully. I ask because I had suggested you look into a medical center & wondered if you were already being seen there.

Ramblin' RoseCo-owner/Moderator "I child-proofed my home and they STILL get in!" (Bumper sticker)

[Guest guest]

Chris

I am new to the group and here bacause my fiancee has neurosarc and a few other

autoimmune things we are just learning about but anyway I just wanted to tell

you that we are in the Grand Rapids area and the neuro that sees is a good

one he doesn't pull any punches. I don't know how to deal with the insurance end

of things but GR is closer then Detroit if you want his name I can give it to

you.

JoDee

>

> >

> >

> > I'm just curious; where are seeing the intern? I had assumed that it was

> > an internist you were seeing until this last message, which I read more

> > carefully. I ask because I had suggested you look into a medical center &

> > wondered if you were already being seen there.

> >

> > *Ramblin' Rose*

> > *Co-owner/Moderator*

> > **

> > " I child-proofed my home and they STILL get in! " (Bumper sticker)

> >

> >

> >

>

[Guest guest]

Yeah, teamwork gets the job done!

Re: warning: high vent content

Chris

http://henryford.com/body.cfm?id=40925

SarcoidosisHenry Ford's Division of Pulmonary and Critical Care Medicine has a

long history of excellence in the treatment of sarcoidosis as well as research

into the causes of and new therapies for the disease. Our pulmonary specialists

ha

[Guest guest]

JoDee, I hope that your input will be useful to Chris. This is a great example

of the strength of this group--while you are trying to deal with your fiance's

issues, you still took the time to offer help to Chris.

Re: warning: high vent content

Chris

I am new to the group and here bacause my fiancee has neurosarc and a few other

autoimmune things we are just learning about but anyway I just wanted to tell

you that we are in the Grand Rapids area and the neuro that sees is a good

one he doesn't pull any punches. I don't know how to deal with the insurance end

of things but GR is closer then Detroit if you want his name I can give it to

you.

JoDee

>

> I'm so sorry that you are going thru all this. It's bad enough to have

a serious chronic illness without having to educate your health care providers,

battle insurance companies (or if you don't have ins, try to find a way to pay

for care, decide which tests are going to give you the most bang for your buck,

etc.). It's a double whammy that sarcoidosis causes such extreme fatigue, and

then you're expected to use what little energy you have to navigate the health

care system, usually with doctors who don't have a

[Guest guest]

That is the best thing about groups like this everyone is able to learn from and

give to others or at the very least be some one to offer a shoulder to cry on

and an ear to listen. I have only been here a few days but have already seen all

of this in just the few weeks of posts that I have read.

JoDee

> >

> > I'm so sorry that you are going thru all this. It's bad enough to

have a serious chronic illness without having to educate your health care

providers, battle insurance companies (or if you don't have ins, try to find a

way to pay for care, decide which tests are going to give you the most bang for

your buck, etc.). It's a double whammy that sarcoidosis causes such extreme

fatigue, and then you're expected to use what little energy you have to navigate

the health care system, usually with doctors who don't have a

>

[Guest guest]

 

hi JoDee

 

welcome to the group & thanks for your offer.  yes, please send along his name & number, i'd like to call his office & see if he can help.  you can just email it to skugger1@...

 

thank you!

 

ChrisI am new to the group and here bacause my fiancee has neurosarc and a few other autoimmune things we are just learning about but anyway I just wanted to tell you that we are in the Grand Rapids area and the neuro that sees is a good one he doesn't pull any punches. I don't know how to deal with the insurance end of things but GR is closer then Detroit if you want his name I can give it to you.

JoDee

[Guest guest]

 

Connie and Rose are both awesome!  not to mention patient!

Yeah, teamwork gets the job done! Re: warning: high vent contentChrishttp://henryford.com/body.cfm?id=40925

SarcoidosisHenry Ford's Division of Pulmonary and Critical Care Medicine has along history of excellence in the treatment of sarcoidosis as well as researchinto the causes of and new therapies for the disease. Our pulmonary specialists

ha------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

I sent his name and number too you let me know if you don't get it and I will

send it through again. Good luck with all that you are trying to deal with and

that your employer is understanding for your needs right now.

JoDee

>

> > Chris

> > I am new to the group and here bacause my fiancee has neurosarc and a few

> > other autoimmune things we are just learning about but anyway I just wanted

> > to tell you that we are in the Grand Rapids area and the neuro that

> > sees is a good one he doesn't pull any punches. I don't know how to deal

> > with the insurance end of things but GR is closer then Detroit if you want

> > his name I can give it to you.

> > JoDee

>

[Guest guest]

Thanks, Chris. One of the cool things about this group is to see the changes in

members over time. I remember when I first found this group, feeling confused,

resentful, afraid; all those emotions that you all know so well. I never would

have thought that I could even help anyone else, let alone be a moderator. But

with knowledge & support came personal growth. You start out just giving

encouragement & sympathy, start sharing some of your experiences. Then you think

of a little tip or two; next thing you know you're an old-timer welcoming the

newbies!

RE: warning: high vent content

>

>

> Wow, Connie! This is why I say you are such a great resource person. I

> wonder

> if your co-workers realize what a treasure they have in that office?

>

>

> Ramblin' Rose

> Co-owner/Moderator

>

> " I child-proofed my home and they STILL get in! " (Bumper sticker)

>

>

>

>

> ________________________________

> To: Neurosarcoidosis@yahoo