Guest guest Posted May 18, 2006 Report Share Posted May 18, 2006 Thanks for explaining that a bit more Tracie as I dont really know all that much about sarcoid, and I only know about the lupus rash because I know a few people with lupus ! Re: Sarc rash-Lupus Have any of the doctors you've seen tested for lupus as this has many similar symptoms and like sarcoid they are wide ranging and it is also an immno disorder, one thing that some lupus sufferers do get it a rash on the face in a butterfly shape.Clair,Sarcoidosis and Lupus and Rheumatoid Arthritis and Diabetic Neuropathy and Multiple Sclerosis and the other Autoimmune diseases have similar/same symptoms. That's the problem. The other diseases have tests that confirm that it is any one of those diseases-- but NS doesn't have any specific test.As far as the rash--if you have "Erythymous Nodusem (sp)" then you have "Lupus Erythymeous Noduseum" which is not the same as Lupus. The rash generally presents the same way for both diseases-- so you are correct-- we need to make sure that our MD's have ruled out those possibilities. It's then that hopefully they'll make the right diagnosis-- of NS or multi-system sarcoidosis.For instance, when I first got sick with sarcoidosis, it presented with pulmonary involvement, iritis, and erythymeous nodusum on my shins and thighs. The rash progressed up the trunk of my body, and now is across my chest- and on my face. The shins are scarred from the original site rash. (I've had this disease for 16+ years.)My MD's ran all the genetic tests, the ANA tests to show the anti-nuclear antibodies and the blood tests, xrays, biopsies, bronchoscopy, emg's, etc to see if it was any other autoimmune process in addition to the sarcoidosis. They went to lung cancer first, then to MS, then to fibromyalgia, then to depression, then finally said- wow, you have sarcoidosis thru your whole body and blood stream. Here's the prednisone, live with it.In the meantime I was getting sicker--and more brain, nerve, bone involvment. It's a process--and can take a year or two to coordinate all the tests-- to get the diagnosis. However, if you have biopsy proven sarc of the lungs, and then start with the systemic sarcoid induced arthritis-- the MD's need to be aware that all the ancillary stuff is sarc related more often than not. Hope this helps,TracieNS Co-owner/moderator ~~~~ *** ~~~ *** ~~~ *** ~~~~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 May 31, 2006 Report Share Posted May 31, 2006 There is a rash with Sarcoid that looks like the lupus rash too, I had it terrible, and the doctor was so sure it was lupus, she did blood test- neg, she did biopsy’s of the rash in like 3 different places, they came back a certain type of granuloma’s that I looked up and were associated with Sarcoid, and I can’t remember the name of those granulomas but I took the article in to the doctor and she finally agreed with me that it was a Sarc rash. Not to say that you can’t have another disease with this one, we all know that happens too. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of clair morgan Sent: Thursday, May 18, 2006 2:23 PM To: Neurosarcoidosis Subject: Re: Sarc rash-Lupus Thanks for explaining that a bit more Tracie as I dont really know all that much about sarcoid, and I only know about the lupus rash because I know a few people with lupus ! Re: Sarc rash-Lupus In a message dated 5/16/06 5:03:25 PM Pacific Daylight Time, clamor1979@... writes: Have any of the doctors you've seen tested for lupus as this has many similar symptoms and like sarcoid they are wide ranging and it is also an immno disorder, one thing that some lupus sufferers do get it a rash on the face in a butterfly shape. Clair, Sarcoidosis and Lupus and Rheumatoid Arthritis and Diabetic Neuropathy and Multiple Sclerosis and the other Autoimmune diseases have similar/same symptoms. That's the problem. The other diseases have tests that confirm that it is any one of those diseases-- but NS doesn't have any specific test. As far as the rash--if you have " Erythymous Nodusem (sp) " then you have " Lupus Erythymeous Noduseum " which is not the same as Lupus. The rash generally presents the same way for both diseases-- so you are correct-- we need to make sure that our MD's have ruled out those possibilities. It's then that hopefully they'll make the right diagnosis-- of NS or multi-system sarcoidosis. For instance, when I first got sick with sarcoidosis, it presented with pulmonary involvement, iritis, and erythymeous nodusum on my shins and thighs. The rash progressed up the trunk of my body, and now is across my chest- and on my face. The shins are scarred from the original site rash. (I've had this disease for 16+ years.) My MD's ran all the genetic tests, the ANA tests to show the anti-nuclear antibodies and the blood tests, xrays, biopsies, bronchoscopy, emg's, etc to see if it was any other autoimmune process in addition to the sarcoidosis. They went to lung cancer first, then to MS, then to fibromyalgia, then to depression, then finally said- wow, you have sarcoidosis thru your whole body and blood stream. Here's the prednisone, live with it. In the meantime I was getting sicker--and more brain, nerve, bone involvment. It's a process--and can take a year or two to coordinate all the tests-- to get the diagnosis. However, if you have biopsy proven sarc of the lungs, and then start with the systemic sarcoid induced arthritis-- the MD's need to be aware that all the ancillary stuff is sarc related more often than not. Hope this helps, Tracie NS Co-owner/moderator ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- Has been cancelled for now. Message 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2006 Report Share Posted May 31, 2006 There is a rash with Sarcoid that looks like the lupus rash too, I had it terrible, and the doctor was so sure it was lupus, she did blood test- neg, she did biopsy’s of the rash in like 3 different places, they came back a certain type of granuloma’s that I looked up and were associated with Sarcoid, and I can’t remember the name of those granulomas but I took the article in to the doctor and she finally agreed with me that it was a Sarc rash. Not to say that you can’t have another disease with this one, we all know that happens too. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of clair morgan Sent: Thursday, May 18, 2006 2:23 PM To: Neurosarcoidosis Subject: Re: Sarc rash-Lupus Thanks for explaining that a bit more Tracie as I dont really know all that much about sarcoid, and I only know about the lupus rash because I know a few people with lupus ! Re: Sarc rash-Lupus In a message dated 5/16/06 5:03:25 PM Pacific Daylight Time, clamor1979@... writes: Have any of the doctors you've seen tested for lupus as this has many similar symptoms and like sarcoid they are wide ranging and it is also an immno disorder, one thing that some lupus sufferers do get it a rash on the face in a butterfly shape. Clair, Sarcoidosis and Lupus and Rheumatoid Arthritis and Diabetic Neuropathy and Multiple Sclerosis and the other Autoimmune diseases have similar/same symptoms. That's the problem. The other diseases have tests that confirm that it is any one of those diseases-- but NS doesn't have any specific test. As far as the rash--if you have " Erythymous Nodusem (sp) " then you have " Lupus Erythymeous Noduseum " which is not the same as Lupus. The rash generally presents the same way for both diseases-- so you are correct-- we need to make sure that our MD's have ruled out those possibilities. It's then that hopefully they'll make the right diagnosis-- of NS or multi-system sarcoidosis. For instance, when I first got sick with sarcoidosis, it presented with pulmonary involvement, iritis, and erythymeous nodusum on my shins and thighs. The rash progressed up the trunk of my body, and now is across my chest- and on my face. The shins are scarred from the original site rash. (I've had this disease for 16+ years.) My MD's ran all the genetic tests, the ANA tests to show the anti-nuclear antibodies and the blood tests, xrays, biopsies, bronchoscopy, emg's, etc to see if it was any other autoimmune process in addition to the sarcoidosis. They went to lung cancer first, then to MS, then to fibromyalgia, then to depression, then finally said- wow, you have sarcoidosis thru your whole body and blood stream. Here's the prednisone, live with it. In the meantime I was getting sicker--and more brain, nerve, bone involvment. It's a process--and can take a year or two to coordinate all the tests-- to get the diagnosis. However, if you have biopsy proven sarc of the lungs, and then start with the systemic sarcoid induced arthritis-- the MD's need to be aware that all the ancillary stuff is sarc related more often than not. Hope this helps, Tracie NS Co-owner/moderator ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- Has been cancelled for now. Message 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 Quote Link to comment Share on other sites More sharing options...
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