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hi all

 

i think i might have figured out how to handle payment for the brain MRI & CT scan & some of the other tests that my new rheumatologist is recommending, so we can start working towards a diagnosis.  i understand that neurosarcoid is a diagnosis of exclusion (nothing is easy with this disease, is it?) so it's important to get started.  it looks like i'll be getting my first brain MRI in a week.

 

the constant drowsiness and mental fatigue i've been feeling for the past several months has lately been escalating to headaches and real difficulty staying focused.  i'm starting to learn that if i give in to the sleepiness as much as i can (about 11 hours of sleep per day lately) it seems to help the headaches a little, as does taking my meds in the morning.  but the headache never really goes away, and ibuprophen doesn't seem to help out very much.  does anyone have any tricks for managing this kind of headache?  i've told my primary about it, he wants to wait until some of the tests are done, & that's fine with me, just thought i'd ask.  the headaches aren't bad, but it's constant and unending, and that's what is hardest to deal with at the moment.

 

i'm also learning alot lately about insurance, and the supposed benefits that are supposed to be available to me, as an uninsured patient, through the recent health care reform.  i've contacted Michigan's health insurance pool about coverage on a pre-existing condition, only to find that i don't qualify for immediate coverage because sarcoidosis is not on their list of accepted pre-existing conditions.  has anyone bumped their head on this?  they tell me i would need proof, in writing, of at least one insurance carrier denying coverage to me because of this condition, before they would let me in... well, so far, i haven't been denied.  there are lots of companies out there who are very happy to take my money and provide lousy coverage, so far none of them have told me 'no'.

 

any & all input is appreciated & i will try very hard to join chat this Friday to say hi to everyone & maybe talk more about it.

 

chris

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I hate to tell you but I seem to have a headache almost all the time, sleep and water, lots of water seem to help me the most, I do take Advil and it takes the edge of it, I'm also on Nortriptyline for my head aches, but still I seem to have at the very least a hint of one all the time, and that's been for about 8 years.  You do get use to it too. the bad ones, no but if they get to bad, I just go to sleep, after drinking a large glass of water.

Your in my prayers, I hope you get some relief soon! Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

 

hi all

 

i think i might have figured out how to handle payment for the brain MRI & CT scan & some of the other tests that my new rheumatologist is recommending, so we can start working towards a diagnosis.  i understand that neurosarcoid is a diagnosis of exclusion (nothing is easy with this disease, is it?) so it's important to get started.  it looks like i'll be getting my first brain MRI in a week.

 

the constant drowsiness and mental fatigue i've been feeling for the past several months has lately been escalating to headaches and real difficulty staying focused.  i'm starting to learn that if i give in to the sleepiness as much as i can (about 11 hours of sleep per day lately) it seems to help the headaches a little, as does taking my meds in the morning.  but the headache never really goes away, and ibuprophen doesn't seem to help out very much.  does anyone have any tricks for managing this kind of headache?  i've told my primary about it, he wants to wait until some of the tests are done, & that's fine with me, just thought i'd ask.  the headaches aren't bad, but it's constant and unending, and that's what is hardest to deal with at the moment.

 

i'm also learning alot lately about insurance, and the supposed benefits that are supposed to be available to me, as an uninsured patient, through the recent health care reform.  i've contacted Michigan's health insurance pool about coverage on a pre-existing condition, only to find that i don't qualify for immediate coverage because sarcoidosis is not on their list of accepted pre-existing conditions.  has anyone bumped their head on this?  they tell me i would need proof, in writing, of at least one insurance carrier denying coverage to me because of this condition, before they would let me in... well, so far, i haven't been denied.  there are lots of companies out there who are very happy to take my money and provide lousy coverage, so far none of them have told me 'no'.

 

any & all input is appreciated & i will try very hard to join chat this Friday to say hi to everyone & maybe talk more about it.

 

chris

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look up the national law regarding pre-existing conditions. It is one of the few things Clinton did right. There is a law that forbids insurance companies from provided ins to people with pre-existing conditions. Hey, it's and idea

To: Neurosarcoidosis Sent: Thu, March 31, 2011 1:34:19 PMSubject: my learning curve

hi all

i think i might have figured out how to handle payment for the brain MRI & CT scan & some of the other tests that my new rheumatologist is recommending, so we can start working towards a diagnosis. i understand that neurosarcoid is a diagnosis of exclusion (nothing is easy with this disease, is it?) so it's important to get started. it looks like i'll be getting my first brain MRI in a week.

the constant drowsiness and mental fatigue i've been feeling for the past several months has lately been escalating to headaches and real difficulty staying focused. i'm starting to learn that if i give in to the sleepiness as much as i can (about 11 hours of sleep per day lately) it seems to help the headaches a little, as does taking my meds in the morning. but the headache never really goes away, and ibuprophen doesn't seem to help out very much. does anyone have any tricks for managing this kind of headache? i've told my primary about it, he wants to wait until some of the tests are done, & that's fine with me, just thought i'd ask. the headaches aren't bad, but it's constant and unending, and that's what is hardest to deal with at the moment.

i'm also learning alot lately about insurance, and the supposed benefits that are supposed to be available to me, as an uninsured patient, through the recent health care reform. i've contacted Michigan's health insurance pool about coverage on a pre-existing condition, only to find that i don't qualify for immediate coverage because sarcoidosis is not on their list of accepted pre-existing conditions. has anyone bumped their head on this? they tell me i would need proof, in writing, of at least one insurance carrier denying coverage to me because of this condition, before they would let me in... well, so far, i haven't been denied. there are lots of companies out there who are very happy to take my money and provide lousy coverage, so far none of them have told me 'no'.

any & all input is appreciated & i will try very hard to join chat this Friday to say hi to everyone & maybe talk more about it.

chris

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thanks for the input Marla, i'm used to the idea of symptoms never going away.  i don't like it, i'm just used to it :)  my headache seems to move around my head all day long, it changes almost minute by minute - sometimes it's behind my eyes, then 10 minutes later it's the back of my head, then it's over my left ear, it's weird.  i'm hoping to avoid pain meds that will exacerbate the drowsiness issues, i'm not quite ready to ask my doctor for stronger stuff yet.  but the water idea sounds like a good one.  i will definitely start trying that!

I hate to tell you but I seem to have a headache almost all the time, sleep and water, lots of water seem to help me the most, I do take Advil and it takes the edge of it, I'm also on Nortriptyline for my head aches, but still I seem to have at the very least a hint of one all the time, and that's been for about 8 years.  You do get use to it too. the bad ones, no but if they get to bad, I just go to sleep, after drinking a large glass of water.

Your in my prayers, I hope you get some relief soon! Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

 

hi all

 

i think i might have figured out how to handle payment for the brain MRI & CT scan & some of the other tests that my new rheumatologist is recommending, so we can start working towards a diagnosis.  i understand that neurosarcoid is a diagnosis of exclusion (nothing is easy with this disease, is it?) so it's important to get started.  it looks like i'll be getting my first brain MRI in a week.

 

the constant drowsiness and mental fatigue i've been feeling for the past several months has lately been escalating to headaches and real difficulty staying focused.  i'm starting to learn that if i give in to the sleepiness as much as i can (about 11 hours of sleep per day lately) it seems to help the headaches a little, as does taking my meds in the morning.  but the headache never really goes away, and ibuprophen doesn't seem to help out very much.  does anyone have any tricks for managing this kind of headache?  i've told my primary about it, he wants to wait until some of the tests are done, & that's fine with me, just thought i'd ask.  the headaches aren't bad, but it's constant and unending, and that's what is hardest to deal with at the moment.

 

i'm also learning alot lately about insurance, and the supposed benefits that are supposed to be available to me, as an uninsured patient, through the recent health care reform.  i've contacted Michigan's health insurance pool about coverage on a pre-existing condition, only to find that i don't qualify for immediate coverage because sarcoidosis is not on their list of accepted pre-existing conditions.  has anyone bumped their head on this?  they tell me i would need proof, in writing, of at least one insurance carrier denying coverage to me because of this condition, before they would let me in... well, so far, i haven't been denied.  there are lots of companies out there who are very happy to take my money and provide lousy coverage, so far none of them have told me 'no'.

 

any & all input is appreciated & i will try very hard to join chat this Friday to say hi to everyone & maybe talk more about it.

 

chris

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that's ridiculous about the insurance. Do these people stay awake all night thinking of ways to make people's lives miserable?!"

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

To: Neurosarcoidosis From: skugger1@...Date: Thu, 31 Mar 2011 13:34:19 -0400Subject: my learning curve

hi all

i think i might have figured out how to handle payment for the brain MRI & CT scan & some of the other tests that my new rheumatologist is recommending, so we can start working towards a diagnosis. i understand that neurosarcoid is a diagnosis of exclusion (nothing is easy with this disease, is it?) so it's important to get started. it looks like i'll be getting my first brain MRI in a week.

the constant drowsiness and mental fatigue i've been feeling for the past several months has lately been escalating to headaches and real difficulty staying focused. i'm starting to learn that if i give in to the sleepiness as much as i can (about 11 hours of sleep per day lately) it seems to help the headaches a little, as does taking my meds in the morning. but the headache never really goes away, and ibuprophen doesn't seem to help out very much. does anyone have any tricks for managing this kind of headache? i've told my primary about it, he wants to wait until some of the tests are done, & that's fine with me, just thought i'd ask. the headaches aren't bad, but it's constant and unending, and that's what is hardest to deal with at the moment.

i'm also learning alot lately about insurance, and the supposed benefits that are supposed to be available to me, as an uninsured patient, through the recent health care reform. i've contacted Michigan's health insurance pool about coverage on a pre-existing condition, only to find that i don't qualify for immediate coverage because sarcoidosis is not on their list of accepted pre-existing conditions. has anyone bumped their head on this? they tell me i would need proof, in writing, of at least one insurance carrier denying coverage to me because of this condition, before they would let me in... well, so far, i haven't been denied. there are lots of companies out there who are very happy to take my money and provide lousy coverage, so far none of them have told me 'no'.

any & all input is appreciated & i will try very hard to join chat this Friday to say hi to everyone & maybe talk more about it.

chris

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Yes i truly think the insurance people do. I have been fighting with them to try to get additional physical therapy and they are refusing. hang in there and keep fighting.MattSubject: RE: my learning curveTo: neurosarcoidosis Date: Friday, April 1, 2011, 3:39 PM

that's ridiculous about the insurance. Do these people stay awake all night thinking of ways to make people's lives miserable?!"

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

To: Neurosarcoidosis From: skugger1@...Date: Thu, 31 Mar 2011 13:34:19 -0400Subject: my learning curve

hi all

i think i might have figured out how to handle payment for the brain MRI & CT scan & some of the other tests that my new rheumatologist is recommending, so we can start working towards a diagnosis. i understand that neurosarcoid is a diagnosis of exclusion (nothing is easy with this disease, is it?) so it's important to get started. it looks like i'll be getting my first brain MRI in a week.

the constant drowsiness and mental fatigue i've been feeling for the past several months has lately been escalating to headaches and real difficulty staying focused. i'm starting to learn that if i give in to the sleepiness as much as i can (about 11 hours of sleep per day lately) it seems to help the headaches a little, as does taking my meds in the morning. but the headache never really goes away, and ibuprophen doesn't seem to help out very much. does anyone have any tricks for managing this kind of headache? i've told my primary about it, he wants to wait until some of the tests are done, & that's fine with me, just thought i'd ask. the headaches aren't bad, but it's constant and unending, and that's what is hardest to deal with at the moment.

i'm also learning alot lately about insurance, and the supposed benefits that are supposed to be available to me, as an uninsured patient, through the recent health care reform. i've contacted Michigan's health insurance pool about coverage on a pre-existing condition, only to find that i don't qualify for immediate coverage because sarcoidosis is not on their list of accepted pre-existing conditions. has anyone bumped their head on this? they tell me i would need proof, in writing, of at least one insurance carrier denying coverage to me because of this condition, before they would let me in... well, so far, i haven't been denied. there are lots of companies out there who are very happy to take my money and provide lousy coverage, so far none of them have told me 'no'.

any & all input is appreciated & i will try very hard to join chat this Friday to say hi to everyone & maybe talk more about it.

chris

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