Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Unfortunately NONE of my docs have told me any of this info. All I was told was what I did NOT have. Bunch of asses! grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2006 Report Share Posted March 22, 2006 Unfortunately NONE of my docs have told me any of this info. All I was told was what I did NOT have. Bunch of asses! grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 -does anyone know what "normal" ACE levels are? The other thing that was really out of wack on my bloodwork was a test called DS-DNA the doc said it was double stranded DNA and mine came back testing borderline for SLE- Systemic Lupus Erythmotosis (spelling may be wrong on that). Can anyone out there tell me if they have abnormal DS-DNA bloodwork and if that is part of NS? Irene Irene, Normal ACE levels are 8-57. This test shows inflammation--although not necessarily specific to sarcoidosis. Here is a website that explains some of the variables. http://www.healthatoz.com/healthatoz/Atoz/ency/angiotensin-converting_enzyme_test.jsp As far as the Systemic Lupus Erythmotosis this is usually a part of sarcoidosis. In our LINKS and ARCHIVES--(scroll down, the address is at the bottom of this and every email sent out) there are a large number of articles and websites that explain the different signs and symptoms of sarcoidosis, and multi-system and neurosarcoidosis. Here is a website that explains SLE further. http://www.niams.nih.gov/hi/topics/lupus/slehandout/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 -does anyone know what "normal" ACE levels are? The other thing that was really out of wack on my bloodwork was a test called DS-DNA the doc said it was double stranded DNA and mine came back testing borderline for SLE- Systemic Lupus Erythmotosis (spelling may be wrong on that). Can anyone out there tell me if they have abnormal DS-DNA bloodwork and if that is part of NS? Irene Irene, Normal ACE levels are 8-57. This test shows inflammation--although not necessarily specific to sarcoidosis. Here is a website that explains some of the variables. http://www.healthatoz.com/healthatoz/Atoz/ency/angiotensin-converting_enzyme_test.jsp As far as the Systemic Lupus Erythmotosis this is usually a part of sarcoidosis. In our LINKS and ARCHIVES--(scroll down, the address is at the bottom of this and every email sent out) there are a large number of articles and websites that explain the different signs and symptoms of sarcoidosis, and multi-system and neurosarcoidosis. Here is a website that explains SLE further. http://www.niams.nih.gov/hi/topics/lupus/slehandout/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 -does anyone know what "normal" ACE levels are? The other thing that was really out of wack on my bloodwork was a test called DS-DNA the doc said it was double stranded DNA and mine came back testing borderline for SLE- Systemic Lupus Erythmotosis (spelling may be wrong on that). Can anyone out there tell me if they have abnormal DS-DNA bloodwork and if that is part of NS? Irene Irene, Normal ACE levels are 8-57. This test shows inflammation--although not necessarily specific to sarcoidosis. Here is a website that explains some of the variables. http://www.healthatoz.com/healthatoz/Atoz/ency/angiotensin-converting_enzyme_test.jsp As far as the Systemic Lupus Erythmotosis this is usually a part of sarcoidosis. In our LINKS and ARCHIVES--(scroll down, the address is at the bottom of this and every email sent out) there are a large number of articles and websites that explain the different signs and symptoms of sarcoidosis, and multi-system and neurosarcoidosis. Here is a website that explains SLE further. http://www.niams.nih.gov/hi/topics/lupus/slehandout/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 I'm out in left field again, but I thought lupus was a totally different disease from sarc. I know lupus is auto-immune & usually treated with steroids, but I'm confused here. Rose, you can have both Lupus and sarc. Lupus pernio, Erythmaeous Lupus (skin rash that comes with SLE and sarc)-- and more. Here's a good site for cutaneous sarc--http://www.aafp.org/afp/20020415/1581.pdf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 I'm out in left field again, but I thought lupus was a totally different disease from sarc. I know lupus is auto-immune & usually treated with steroids, but I'm confused here. Rose, you can have both Lupus and sarc. Lupus pernio, Erythmaeous Lupus (skin rash that comes with SLE and sarc)-- and more. Here's a good site for cutaneous sarc--http://www.aafp.org/afp/20020415/1581.pdf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 I'm out in left field again, but I thought lupus was a totally different disease from sarc. I know lupus is auto-immune & usually treated with steroids, but I'm confused here. Rose, you can have both Lupus and sarc. Lupus pernio, Erythmaeous Lupus (skin rash that comes with SLE and sarc)-- and more. Here's a good site for cutaneous sarc--http://www.aafp.org/afp/20020415/1581.pdf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Tracie, maybe I'm out in left field again, but I thought lupus was a totally different disease from sarc. I know lupus is auto-immune & usually treated with steroids, but I'm confused here. Ramblin' Rose Moderator From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Specific QuestionDate: Thu, 23 Mar 2006 19:13:04 EST -does anyone know what "normal" ACE levels are? The other thing that was really out of wack on my bloodwork was a test called DS-DNA the doc said it was double stranded DNA and mine came back testing borderline for SLE-Systemic Lupus Erythmotosis (spelling may be wrong on that). Can anyone out there tell me if they have abnormal DS-DNA bloodwork and if that is part of NS? IreneIrene,Normal ACE levels are 8-57. This test shows inflammation--although not necessarily specific to sarcoidosis. Here is a website that explains some of the variables.http://www.healthatoz.com/healthatoz/Atoz/ency/angiotensin-converting_enzyme_test.jspAs far as the Systemic Lupus Erythmotosis this is usually a part of sarcoidosis. In our LINKS and ARCHIVES--(scroll down, the address is at the bottom of this and every email sent out) there are a large number of articles and websites that explain the different signs and symptoms of sarcoidosis, and multi-system and neurosarcoidosis.Here is a website that explains SLE further.http://www.niams.nih.gov/hi/topics/lupus/slehandout/~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Tracie, maybe I'm out in left field again, but I thought lupus was a totally different disease from sarc. I know lupus is auto-immune & usually treated with steroids, but I'm confused here. Ramblin' Rose Moderator From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Specific QuestionDate: Thu, 23 Mar 2006 19:13:04 EST -does anyone know what "normal" ACE levels are? The other thing that was really out of wack on my bloodwork was a test called DS-DNA the doc said it was double stranded DNA and mine came back testing borderline for SLE-Systemic Lupus Erythmotosis (spelling may be wrong on that). Can anyone out there tell me if they have abnormal DS-DNA bloodwork and if that is part of NS? IreneIrene,Normal ACE levels are 8-57. This test shows inflammation--although not necessarily specific to sarcoidosis. Here is a website that explains some of the variables.http://www.healthatoz.com/healthatoz/Atoz/ency/angiotensin-converting_enzyme_test.jspAs far as the Systemic Lupus Erythmotosis this is usually a part of sarcoidosis. In our LINKS and ARCHIVES--(scroll down, the address is at the bottom of this and every email sent out) there are a large number of articles and websites that explain the different signs and symptoms of sarcoidosis, and multi-system and neurosarcoidosis.Here is a website that explains SLE further.http://www.niams.nih.gov/hi/topics/lupus/slehandout/~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Tracie, maybe I'm out in left field again, but I thought lupus was a totally different disease from sarc. I know lupus is auto-immune & usually treated with steroids, but I'm confused here. Ramblin' Rose Moderator From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Specific QuestionDate: Thu, 23 Mar 2006 19:13:04 EST -does anyone know what "normal" ACE levels are? The other thing that was really out of wack on my bloodwork was a test called DS-DNA the doc said it was double stranded DNA and mine came back testing borderline for SLE-Systemic Lupus Erythmotosis (spelling may be wrong on that). Can anyone out there tell me if they have abnormal DS-DNA bloodwork and if that is part of NS? IreneIrene,Normal ACE levels are 8-57. This test shows inflammation--although not necessarily specific to sarcoidosis. Here is a website that explains some of the variables.http://www.healthatoz.com/healthatoz/Atoz/ency/angiotensin-converting_enzyme_test.jspAs far as the Systemic Lupus Erythmotosis this is usually a part of sarcoidosis. In our LINKS and ARCHIVES--(scroll down, the address is at the bottom of this and every email sent out) there are a large number of articles and websites that explain the different signs and symptoms of sarcoidosis, and multi-system and neurosarcoidosis.Here is a website that explains SLE further.http://www.niams.nih.gov/hi/topics/lupus/slehandout/~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Ducky- so it is possible I have BOTH!! That could explain the Neuro saying NS and the Rheumy saying SLE. My future is looking bleaker all the time,I think I'll go bury my head back in the sand now..... Irene, I so totally understand. It does feel so much safer when we either have no knowledge, or we have a definate diagnosis. although it's possible to have multiple auto-immune diseases--more than likely it's the sarc that's causing secondary problems to the primary sarcoid problem. Once we get the sarc under control, the other stuff will follow. What kind of treatment are you on? Have you taken a look at the LINKS and ARCHIVES-- there is alot of info that is good to take to the MD's with you. Since we are a Medical rarity (NS is a part of the list of diseases on the National Organization of Rare Disease--NORD) and so we have to educate those around us. Let us know how we can help, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Ducky- so it is possible I have BOTH!! That could explain the Neuro saying NS and the Rheumy saying SLE. My future is looking bleaker all the time,I think I'll go bury my head back in the sand now..... Irene, I so totally understand. It does feel so much safer when we either have no knowledge, or we have a definate diagnosis. although it's possible to have multiple auto-immune diseases--more than likely it's the sarc that's causing secondary problems to the primary sarcoid problem. Once we get the sarc under control, the other stuff will follow. What kind of treatment are you on? Have you taken a look at the LINKS and ARCHIVES-- there is alot of info that is good to take to the MD's with you. Since we are a Medical rarity (NS is a part of the list of diseases on the National Organization of Rare Disease--NORD) and so we have to educate those around us. Let us know how we can help, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Ducky- so it is possible I have BOTH!! That could explain the Neuro saying NS and the Rheumy saying SLE. My future is looking bleaker all the time,I think I'll go bury my head back in the sand now..... Irene, I so totally understand. It does feel so much safer when we either have no knowledge, or we have a definate diagnosis. although it's possible to have multiple auto-immune diseases--more than likely it's the sarc that's causing secondary problems to the primary sarcoid problem. Once we get the sarc under control, the other stuff will follow. What kind of treatment are you on? Have you taken a look at the LINKS and ARCHIVES-- there is alot of info that is good to take to the MD's with you. Since we are a Medical rarity (NS is a part of the list of diseases on the National Organization of Rare Disease--NORD) and so we have to educate those around us. Let us know how we can help, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Ducky- so it is possible I have BOTH!! That could explain the Neuro saying NS and the Rheumy saying SLE. My future is looking bleaker all the time,I think I'll go bury my head back in the sand now..... Irene > > In a message dated 3/23/06 9:12:16 PM Pacific Standard Time, > mamadogrose@... writes: > > > > I'm out in left field again, but I thought lupus was a totally different > > disease from sarc. I know lupus is auto-immune & usually treated with > > steroids, but I'm confused here. > > > > Rose, you can have both Lupus and sarc. Lupus pernio, Erythmaeous Lupus > (skin rash that comes with SLE and sarc)-- and more. > > Here's a good site for cutaneous > sarc--http://www.aafp.org/afp/20020415/1581.pdf > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Ducky- so it is possible I have BOTH!! That could explain the Neuro saying NS and the Rheumy saying SLE. My future is looking bleaker all the time,I think I'll go bury my head back in the sand now..... Irene > > In a message dated 3/23/06 9:12:16 PM Pacific Standard Time, > mamadogrose@... writes: > > > > I'm out in left field again, but I thought lupus was a totally different > > disease from sarc. I know lupus is auto-immune & usually treated with > > steroids, but I'm confused here. > > > > Rose, you can have both Lupus and sarc. Lupus pernio, Erythmaeous Lupus > (skin rash that comes with SLE and sarc)-- and more. > > Here's a good site for cutaneous > sarc--http://www.aafp.org/afp/20020415/1581.pdf > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 I am not on any medication for the disease- I have really lousy health insurance now- I have only gone to the doctor once here in NC with my new medical insurance and it cost me $670 out of pocket just for a regular visit to renew my Rx for Fioranol for migraine headaches (this is the only medication I take-and only if I am desperate) and bloodwork- not a Neuro- in fact she was a Physicians Assistant. I only had one pill left and the prescription was over 2 1/2 yrs old but they did still lessen the headaches. Because of my past medical history it was costing me $584 a month for just me to have blue cross blue shield of NC- that was more than half a months pay for me, and I just couldnt do it anymore. Because I work for a company in a different state I have to carry my own health insurance so I can't get a company rate. Steve my hubby who has MS has medicare which is almost as bad as the plan I have. We are the proverbial " fall through the cracks " couple- I had applied for Soc Sec Disability but was turned down twice- Steve has been on SSD since 1990. I work from my home here in NC for a company in NY. I have been fortunate to have found a job that would allow me to work from home and to move here when I could no longer afford to live in NY. The Physicians Assistant at the appointment I went to wanted me to make an appointment with a Neuro but I simply cant afford it. I literally lost my house in forclosure in NY in 1992 due to illness and lack of decent insurance. I dont ever want to go through that again, it has taken me 14 years to crawl back from financial ruin. I spend a lot of time praying to get through one more day and deal with this one day at a time. Dr Rosen in NY did give me a definate DX of NS- that is why my insurance was so high when I applied here- if you have a DX already they can basically charge whatever they want. There are no easy answers here, I wish there were. Irene > > In a message dated 3/24/06 12:15:51 PM Pacific Standard Time, > ilambert@... writes: > > > > Ducky- so it is possible I have BOTH!! That could explain the Neuro > > saying NS and the Rheumy saying SLE. My future is looking bleaker all > > the time,I think I'll go bury my head back in the sand now..... : ( > > > > Irene, > I so totally understand. It does feel so much safer when we either have no > knowledge, or we have a definate diagnosis. > > although it's possible to have multiple auto-immune diseases--more than > likely it's the sarc that's causing secondary problems to the primary sarcoid > problem. Once we get the sarc under control, the other stuff will follow. > > What kind of treatment are you on? Have you taken a look at the LINKS and > ARCHIVES-- there is alot of info that is good to take to the MD's with you. > Since we are a Medical rarity (NS is a part of the list of diseases on the > National Organization of Rare Disease--NORD) and so we have to educate those around > us. > > Let us know how we can help, > Tracie > NS Co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 I am not on any medication for the disease- I have really lousy health insurance now- I have only gone to the doctor once here in NC with my new medical insurance and it cost me $670 out of pocket just for a regular visit to renew my Rx for Fioranol for migraine headaches (this is the only medication I take-and only if I am desperate) and bloodwork- not a Neuro- in fact she was a Physicians Assistant. I only had one pill left and the prescription was over 2 1/2 yrs old but they did still lessen the headaches. Because of my past medical history it was costing me $584 a month for just me to have blue cross blue shield of NC- that was more than half a months pay for me, and I just couldnt do it anymore. Because I work for a company in a different state I have to carry my own health insurance so I can't get a company rate. Steve my hubby who has MS has medicare which is almost as bad as the plan I have. We are the proverbial " fall through the cracks " couple- I had applied for Soc Sec Disability but was turned down twice- Steve has been on SSD since 1990. I work from my home here in NC for a company in NY. I have been fortunate to have found a job that would allow me to work from home and to move here when I could no longer afford to live in NY. The Physicians Assistant at the appointment I went to wanted me to make an appointment with a Neuro but I simply cant afford it. I literally lost my house in forclosure in NY in 1992 due to illness and lack of decent insurance. I dont ever want to go through that again, it has taken me 14 years to crawl back from financial ruin. I spend a lot of time praying to get through one more day and deal with this one day at a time. Dr Rosen in NY did give me a definate DX of NS- that is why my insurance was so high when I applied here- if you have a DX already they can basically charge whatever they want. There are no easy answers here, I wish there were. Irene > > In a message dated 3/24/06 12:15:51 PM Pacific Standard Time, > ilambert@... writes: > > > > Ducky- so it is possible I have BOTH!! That could explain the Neuro > > saying NS and the Rheumy saying SLE. My future is looking bleaker all > > the time,I think I'll go bury my head back in the sand now..... : ( > > > > Irene, > I so totally understand. It does feel so much safer when we either have no > knowledge, or we have a definate diagnosis. > > although it's possible to have multiple auto-immune diseases--more than > likely it's the sarc that's causing secondary problems to the primary sarcoid > problem. Once we get the sarc under control, the other stuff will follow. > > What kind of treatment are you on? Have you taken a look at the LINKS and > ARCHIVES-- there is alot of info that is good to take to the MD's with you. > Since we are a Medical rarity (NS is a part of the list of diseases on the > National Organization of Rare Disease--NORD) and so we have to educate those around > us. > > Let us know how we can help, > Tracie > NS Co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Irene, it is common to have more than one immune disorder; we just attract 'em like moths. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Specific QuestionDate: Fri, 24 Mar 2006 16:50:46 -0000Ducky- so it is possible I have BOTH!! That could explain the Neuro saying NS and the Rheumy saying SLE. My future is looking bleaker all the time,I think I'll go bury my head back in the sand now..... Irene>> > > > > I'm out in left field again, but I thought lupus was a totally different > > disease from sarc. I know lupus is auto-immune & usually treated with > > steroids, but I'm confused here.> > > > Rose, you can have both Lupus and sarc. Lupus pernio, Erythmaeous Lupus > (skin rash that comes with SLE and sarc)-- and more.> > Here's a good site for cutaneous > sarc--http://www.aafp.org/afp/20020415/1581.pdf>~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Irene, it is common to have more than one immune disorder; we just attract 'em like moths. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Specific QuestionDate: Fri, 24 Mar 2006 16:50:46 -0000Ducky- so it is possible I have BOTH!! That could explain the Neuro saying NS and the Rheumy saying SLE. My future is looking bleaker all the time,I think I'll go bury my head back in the sand now..... Irene>> > > > > I'm out in left field again, but I thought lupus was a totally different > > disease from sarc. I know lupus is auto-immune & usually treated with > > steroids, but I'm confused here.> > > > Rose, you can have both Lupus and sarc. Lupus pernio, Erythmaeous Lupus > (skin rash that comes with SLE and sarc)-- and more.> > Here's a good site for cutaneous > sarc--http://www.aafp.org/afp/20020415/1581.pdf>~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Irene, it is common to have more than one immune disorder; we just attract 'em like moths. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Specific QuestionDate: Fri, 24 Mar 2006 16:50:46 -0000Ducky- so it is possible I have BOTH!! That could explain the Neuro saying NS and the Rheumy saying SLE. My future is looking bleaker all the time,I think I'll go bury my head back in the sand now..... Irene>> > > > > I'm out in left field again, but I thought lupus was a totally different > > disease from sarc. I know lupus is auto-immune & usually treated with > > steroids, but I'm confused here.> > > > Rose, you can have both Lupus and sarc. Lupus pernio, Erythmaeous Lupus > (skin rash that comes with SLE and sarc)-- and more.> > Here's a good site for cutaneous > sarc--http://www.aafp.org/afp/20020415/1581.pdf>~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Hi Ireane- where in NC do u live- I dont know if u are near Chapel hill but the hospital there should be able to provide u with low cost to free medical care- also keep trying to get disability- it usally takes a few tries to bget SSDI= also try to get a lawyer who can help u get SSDI- If u are in the RTP area i can recommend a few- Hopes this helps- Matt- (i grew up in NC) --- ilambert1957 ilambert@...> wrote: > I am not on any medication for the disease- I have > really lousy > health insurance now- I have only gone to the doctor > once here in NC > with my new medical insurance and it cost me $670 > out of pocket just > for a regular visit to renew my Rx for Fioranol for > migraine headaches > (this is the only medication I take-and only if I am > desperate) and > bloodwork- not a Neuro- in fact she was a Physicians > Assistant. I > only had one pill left and the prescription was over > 2 1/2 yrs old > but they did still lessen the headaches. Because of > my past medical > history it was costing me $584 a month for just me > to have blue cross > blue shield of NC- that was more than half a months > pay for me, and I > just couldnt do it anymore. Because I work for a > company in a > different state I have to carry my own health > insurance so I can't > get a company rate. Steve my hubby who has MS has > medicare which is > almost as bad as the plan I have. We are the > proverbial " fall through > the cracks " couple- I had applied for Soc Sec > Disability but was > turned down twice- Steve has been on SSD since 1990. > I work from my > home here in NC for a company in NY. I have been > fortunate to have > found a job that would allow me to work from home > and to move here > when I could no longer afford to live in NY. The > Physicians Assistant > at the appointment I went to wanted me to make an > appointment with a > Neuro but I simply cant afford it. I literally lost > my house in > forclosure in NY in 1992 due to illness and lack of > decent insurance. > I dont ever want to go through that again, it has > taken me 14 years > to crawl back from financial ruin. I spend a lot of > time praying to > get through one more day and deal with this one day > at a time. Dr > Rosen in NY did give me a definate DX of NS- that is > why my insurance > was so high when I applied here- if you have a DX > already they can > basically charge whatever they want. There are no > easy answers here, > I wish there were. Irene > > > > > > In a message dated 3/24/06 12:15:51 PM Pacific > Standard Time, > > ilambert@... writes: > > > > > > > Ducky- so it is possible I have BOTH!! That > could explain the > Neuro > > > saying NS and the Rheumy saying SLE. My future > is looking bleaker > all > > > the time,I think I'll go bury my head back in > the sand now..... : > ( > > > > > > > Irene, > > I so totally understand. It does feel so much > safer when we either > have no > > knowledge, or we have a definate diagnosis. > > > > although it's possible to have multiple > auto-immune diseases--more > than > > likely it's the sarc that's causing secondary > problems to the > primary sarcoid > > problem. Once we get the sarc under control, the > other stuff will > follow. > > > > What kind of treatment are you on? Have you taken > a look at the > LINKS and > > ARCHIVES-- there is alot of info that is good to > take to the MD's > with you. > > Since we are a Medical rarity (NS is a part of the > list of diseases > on the > > National Organization of Rare Disease--NORD) and > so we have to > educate those around > > us. > > > > Let us know how we can help, > > Tracie > > NS Co-owner/moderator > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Hi Ireane- where in NC do u live- I dont know if u are near Chapel hill but the hospital there should be able to provide u with low cost to free medical care- also keep trying to get disability- it usally takes a few tries to bget SSDI= also try to get a lawyer who can help u get SSDI- If u are in the RTP area i can recommend a few- Hopes this helps- Matt- (i grew up in NC) --- ilambert1957 ilambert@...> wrote: > I am not on any medication for the disease- I have > really lousy > health insurance now- I have only gone to the doctor > once here in NC > with my new medical insurance and it cost me $670 > out of pocket just > for a regular visit to renew my Rx for Fioranol for > migraine headaches > (this is the only medication I take-and only if I am > desperate) and > bloodwork- not a Neuro- in fact she was a Physicians > Assistant. I > only had one pill left and the prescription was over > 2 1/2 yrs old > but they did still lessen the headaches. Because of > my past medical > history it was costing me $584 a month for just me > to have blue cross > blue shield of NC- that was more than half a months > pay for me, and I > just couldnt do it anymore. Because I work for a > company in a > different state I have to carry my own health > insurance so I can't > get a company rate. Steve my hubby who has MS has > medicare which is > almost as bad as the plan I have. We are the > proverbial " fall through > the cracks " couple- I had applied for Soc Sec > Disability but was > turned down twice- Steve has been on SSD since 1990. > I work from my > home here in NC for a company in NY. I have been > fortunate to have > found a job that would allow me to work from home > and to move here > when I could no longer afford to live in NY. The > Physicians Assistant > at the appointment I went to wanted me to make an > appointment with a > Neuro but I simply cant afford it. I literally lost > my house in > forclosure in NY in 1992 due to illness and lack of > decent insurance. > I dont ever want to go through that again, it has > taken me 14 years > to crawl back from financial ruin. I spend a lot of > time praying to > get through one more day and deal with this one day > at a time. Dr > Rosen in NY did give me a definate DX of NS- that is > why my insurance > was so high when I applied here- if you have a DX > already they can > basically charge whatever they want. There are no > easy answers here, > I wish there were. Irene > > > > > > In a message dated 3/24/06 12:15:51 PM Pacific > Standard Time, > > ilambert@... writes: > > > > > > > Ducky- so it is possible I have BOTH!! That > could explain the > Neuro > > > saying NS and the Rheumy saying SLE. My future > is looking bleaker > all > > > the time,I think I'll go bury my head back in > the sand now..... : > ( > > > > > > > Irene, > > I so totally understand. It does feel so much > safer when we either > have no > > knowledge, or we have a definate diagnosis. > > > > although it's possible to have multiple > auto-immune diseases--more > than > > likely it's the sarc that's causing secondary > problems to the > primary sarcoid > > problem. Once we get the sarc under control, the > other stuff will > follow. > > > > What kind of treatment are you on? Have you taken > a look at the > LINKS and > > ARCHIVES-- there is alot of info that is good to > take to the MD's > with you. > > Since we are a Medical rarity (NS is a part of the > list of diseases > on the > > National Organization of Rare Disease--NORD) and > so we have to > educate those around > > us. > > > > Let us know how we can help, > > Tracie > > NS Co-owner/moderator > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Irene You can bury your head in the sand but we'll just drag you back out. LOL Besides it's more fun to rant & rave in here.:^} grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Irene You can bury your head in the sand but we'll just drag you back out. LOL Besides it's more fun to rant & rave in here.:^} grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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