Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 Lots going on and not a lot of time to spend.. but I've had a couple more trips to the Emergency Room over the last 2 weeks and I'm getting pretty scared.. They all seem to agree that its " NOT MY SACOID " but they refuse to draw any blood because they say that that's the initial way to diagnosis sarcoid but not the way to test for a flare.. but yet again they can not tell me how to check for that.. I know that's total " BS " my MRI without contrast is negative.. I can't have the contrast because my renal profile is high.. that alone should throw up a red flag that maybe, " SARCOID " has now entered into my kidneys.. I am freaking out!! Tracie, you will be glad to know tha my diabetic doctor realizes I have fallen into the " Vanderbilt Hole " and I saw a new PCP on Friday outside the system.. she says all this could be my sarcoid.. but it could be Arterial Vasculitis.. that is causing my vertigo, the pain and the horrilbe ringing/distorted sounds in my r ear.. and my vision is horrible. she says if this is the arterial vasculitis and left untreated I will go blind.. OMG!! and get this.. the blood test that she drew was " crp " and " sed rate " the very two test that I have been begging Vanderbilt doctors to draw for months and they refuse... because they are certain that its not the sarcoid.. plus they also told me.. that " for you, there is no futher treatment for it " Now for the rest of the story.. my email is gonna have to change for a couple of weeks.. I've changed it in yahoo so I should be getting the emails ok.. if not my address is topdatster@... or stopdat2005@.... seems I forgot to pay the bill... and not being this far into the month I don't have the money to pay it till next month.. ohh yeah, please I am on disability and " WANT " to be.. " NOT " !! Could somebody please take me off this train? I want OFF! Sorry guys, for the rant.. as I've mentioned I think. I'm am freaking totally out.. can't get anyone to help me yet.. but hopefully I will soon.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 Lots going on and not a lot of time to spend.. but I've had a couple more trips to the Emergency Room over the last 2 weeks and I'm getting pretty scared.. They all seem to agree that its " NOT MY SACOID " but they refuse to draw any blood because they say that that's the initial way to diagnosis sarcoid but not the way to test for a flare.. but yet again they can not tell me how to check for that.. I know that's total " BS " my MRI without contrast is negative.. I can't have the contrast because my renal profile is high.. that alone should throw up a red flag that maybe, " SARCOID " has now entered into my kidneys.. I am freaking out!! Tracie, you will be glad to know tha my diabetic doctor realizes I have fallen into the " Vanderbilt Hole " and I saw a new PCP on Friday outside the system.. she says all this could be my sarcoid.. but it could be Arterial Vasculitis.. that is causing my vertigo, the pain and the horrilbe ringing/distorted sounds in my r ear.. and my vision is horrible. she says if this is the arterial vasculitis and left untreated I will go blind.. OMG!! and get this.. the blood test that she drew was " crp " and " sed rate " the very two test that I have been begging Vanderbilt doctors to draw for months and they refuse... because they are certain that its not the sarcoid.. plus they also told me.. that " for you, there is no futher treatment for it " Now for the rest of the story.. my email is gonna have to change for a couple of weeks.. I've changed it in yahoo so I should be getting the emails ok.. if not my address is topdatster@... or stopdat2005@.... seems I forgot to pay the bill... and not being this far into the month I don't have the money to pay it till next month.. ohh yeah, please I am on disability and " WANT " to be.. " NOT " !! Could somebody please take me off this train? I want OFF! Sorry guys, for the rant.. as I've mentioned I think. I'm am freaking totally out.. can't get anyone to help me yet.. but hopefully I will soon.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 , My heart goes out to you, hon..........you hang in there and know we are here for you. I know what it is like to be sick and have the Doc say "you are in remission"! That is what mine told me nearly 2 years ago when I ended up in the hospital about 2 weeks later and almost died! I think it scared him tho, because he got me to Methodist Hospital in Indy and saved my life. I know none of them knows a lot about Sarcoid, but it DOES seem like they would be willing to try anything to help! It is very frustrating, I know. You just take care of yourself and I will keep you in my prayers. And by the way, you know you can vent ANY TIME you want! :-) That is what we are here for. Love ya, Darlene NS Co-Owner/Moderator Checking in Lots going on and not a lot of time to spend.. but I've had a couple more trips to the Emergency Room over the last 2 weeks and I'm getting pretty scared.. They all seem to agree that its "NOT MY SACOID" but they refuse to draw any blood because they say that that's the initial way to diagnosis sarcoid but not the way to test for a flare.. but yet again they can not tell me how to check for that.. I know that's total "BS" my MRI without contrast is negative.. I can't have the contrast because my renal profile is high.. that alone should throw up a red flag that maybe, "SARCOID" has now entered into my kidneys.. I am freaking out!! Tracie, you will be glad to know tha my diabetic doctor realizes I have fallen into the "Vanderbilt Hole" and I saw a new PCP on Friday outside the system.. she says all this could be my sarcoid.. but it could be Arterial Vasculitis.. that is causing my vertigo, the pain and the horrilbe ringing/distorted sounds in my r ear.. and my vision is horrible. she says if this is the arterial vasculitis and left untreated I will go blind.. OMG!! and get this.. the blood test that she drew was "crp" and "sed rate" the very two test that I have been begging Vanderbilt doctors to draw for months and they refuse... because they are certain that its not the sarcoid.. plus they also told me.. that "for you, there is no futher treatment for it" Now for the rest of the story.. my email is gonna have to change for a couple of weeks.. I've changed it in yahoo so I should be getting the emails ok.. if not my address is topdatster (AT) gmail (DOT) com or stopdat2005 (AT) yahoo (DOT) com.. seems I forgot to pay the bill... and not being this far into the month I don't have the money to pay it till next month.. ohh yeah, please I am on disability and "WANT" to be.. "NOT"!! Could somebody please take me off this train? I want OFF!Sorry guys, for the rant.. as I've mentioned I think. I'm am freaking totally out.. can't get anyone to help me yet.. but hopefully I will soon.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 , My heart goes out to you, hon..........you hang in there and know we are here for you. I know what it is like to be sick and have the Doc say "you are in remission"! That is what mine told me nearly 2 years ago when I ended up in the hospital about 2 weeks later and almost died! I think it scared him tho, because he got me to Methodist Hospital in Indy and saved my life. I know none of them knows a lot about Sarcoid, but it DOES seem like they would be willing to try anything to help! It is very frustrating, I know. You just take care of yourself and I will keep you in my prayers. And by the way, you know you can vent ANY TIME you want! :-) That is what we are here for. Love ya, Darlene NS Co-Owner/Moderator Checking in Lots going on and not a lot of time to spend.. but I've had a couple more trips to the Emergency Room over the last 2 weeks and I'm getting pretty scared.. They all seem to agree that its "NOT MY SACOID" but they refuse to draw any blood because they say that that's the initial way to diagnosis sarcoid but not the way to test for a flare.. but yet again they can not tell me how to check for that.. I know that's total "BS" my MRI without contrast is negative.. I can't have the contrast because my renal profile is high.. that alone should throw up a red flag that maybe, "SARCOID" has now entered into my kidneys.. I am freaking out!! Tracie, you will be glad to know tha my diabetic doctor realizes I have fallen into the "Vanderbilt Hole" and I saw a new PCP on Friday outside the system.. she says all this could be my sarcoid.. but it could be Arterial Vasculitis.. that is causing my vertigo, the pain and the horrilbe ringing/distorted sounds in my r ear.. and my vision is horrible. she says if this is the arterial vasculitis and left untreated I will go blind.. OMG!! and get this.. the blood test that she drew was "crp" and "sed rate" the very two test that I have been begging Vanderbilt doctors to draw for months and they refuse... because they are certain that its not the sarcoid.. plus they also told me.. that "for you, there is no futher treatment for it" Now for the rest of the story.. my email is gonna have to change for a couple of weeks.. I've changed it in yahoo so I should be getting the emails ok.. if not my address is topdatster (AT) gmail (DOT) com or stopdat2005 (AT) yahoo (DOT) com.. seems I forgot to pay the bill... and not being this far into the month I don't have the money to pay it till next month.. ohh yeah, please I am on disability and "WANT" to be.. "NOT"!! Could somebody please take me off this train? I want OFF!Sorry guys, for the rant.. as I've mentioned I think. I'm am freaking totally out.. can't get anyone to help me yet.. but hopefully I will soon.. Quote Link to comment Share on other sites More sharing options...
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