Re: from kicm - remicade treatment, thanks tammy, and csf results questions

[Guest guest]

Dear tammy, that is very kind of you to offer to help look things up for up, thank you, and thanks for the good thoughts as well. ive made a little headway on the csf tests, just finding out what some of them were at least, some were for tests for the oligoclonal bands they test for. igg, iga, igm. the igm kits werent available so i dont have those results. the iga was very high. at first i panicked thinking it automatically menat ms. but i did manage to find an article that indicated that those with ns often have elevated levels of these as well. there were some other tests that were pretty high as well that i am still working on finding definitions for. m-tp, crp, are both very high. anti-dna ab, anti nuclear, ace both csf and serum, and tnf-a were all missing from my file but the dr said the ace and tnf were also high . my blood work , my co2 is always

pretty low, i dont know what that means either. when i try to ask the drs what the csf results mean they say my immune system is attacking my body. well i can get that much, i want to know what those tests mean specifically, if htey are relationship to sarcoidosis etc. or mean something else. no one will answer anything, even in general and i cant really find anything on line and am too tired to look anymore or try to make sense of them if i do find anything. i hope at my next appt in two weeks i can make the dr really answer some questions but i doubt it. clinic appts here, well, you are seen with about 10 other people walking in every five minutes to get whta they want from the dr. it wont go well. well take care kim ns moderator

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[Guest guest]

Kim, I'll work on getting info on some of those labs, but I may not find much as far as how they relate to sarc.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: from kicm - remicade treatment, thanks tammy, and csf results questionsDate: Tue, 21 Mar 2006 11:29:50 -0800 (PST)

Dear tammy, that is very kind of you to offer to help look things up for up, thank you, and thanks for the good thoughts as well. ive made a little headway on the csf tests, just finding out what some of them were at least, some were for tests for the oligoclonal bands they test for. igg, iga, igm. the igm kits werent available so i dont have those results. the iga was very high. at first i panicked thinking it automatically menat ms. but i did manage to find an article that indicated that those with ns often have elevated levels of these as well. there were some other tests that were pretty high as well that i am still working on finding definitions for. m-tp, crp, are both very high. anti-dna ab, anti nuclear, ace both csf and serum, and tnf-a were all missing from my file but the dr said the ace and tnf were also high . my blood work , my co2 is always pretty low, i dont know what that means either. when i try to ask the drs what the csf results mean they say my immune system is attacking my body. well i can get that much, i want to know what those tests mean specifically, if htey are relationship to sarcoidosis etc. or mean something else. no one will answer anything, even in general and i cant really find anything on line and am too tired to look anymore or try to make sense of them if i do find anything.

i hope at my next appt in two weeks i can make the dr really answer some questions but i doubt it. clinic appts here, well, you are seen with about 10 other people walking in every five minutes to get whta they want from the dr. it wont go well.

well take care

kim

ns moderator

Yahoo! TravelFind great deals to the top 10 hottest destinations! ~~~~ *** ~~~ *** ~~~ *** ~~~~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

[Guest guest]

Kim, I'll work on getting info on some of those labs, but I may not find much as far as how they relate to sarc.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: from kicm - remicade treatment, thanks tammy, and csf results questionsDate: Tue, 21 Mar 2006 11:29:50 -0800 (PST)

Dear tammy, that is very kind of you to offer to help look things up for up, thank you, and thanks for the good thoughts as well. ive made a little headway on the csf tests, just finding out what some of them were at least, some were for tests for the oligoclonal bands they test for. igg, iga, igm. the igm kits werent available so i dont have those results. the iga was very high. at first i panicked thinking it automatically menat ms. but i did manage to find an article that indicated that those with ns often have elevated levels of these as well. there were some other tests that were pretty high as well that i am still working on finding definitions for. m-tp, crp, are both very high. anti-dna ab, anti nuclear, ace both csf and serum, and tnf-a were all missing from my file but the dr said the ace and tnf were also high . my blood work , my co2 is always pretty low, i dont know what that means either. when i try to ask the drs what the csf results mean they say my immune system is attacking my body. well i can get that much, i want to know what those tests mean specifically, if htey are relationship to sarcoidosis etc. or mean something else. no one will answer anything, even in general and i cant really find anything on line and am too tired to look anymore or try to make sense of them if i do find anything.

i hope at my next appt in two weeks i can make the dr really answer some questions but i doubt it. clinic appts here, well, you are seen with about 10 other people walking in every five minutes to get whta they want from the dr. it wont go well.

well take care

kim

ns moderator

Yahoo! TravelFind great deals to the top 10 hottest destinations! ~~~~ *** ~~~ *** ~~~ *** ~~~~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

[Guest guest]

Kim, I'll work on getting info on some of those labs, but I may not find much as far as how they relate to sarc.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: from kicm - remicade treatment, thanks tammy, and csf results questionsDate: Tue, 21 Mar 2006 11:29:50 -0800 (PST)

Dear tammy, that is very kind of you to offer to help look things up for up, thank you, and thanks for the good thoughts as well. ive made a little headway on the csf tests, just finding out what some of them were at least, some were for tests for the oligoclonal bands they test for. igg, iga, igm. the igm kits werent available so i dont have those results. the iga was very high. at first i panicked thinking it automatically menat ms. but i did manage to find an article that indicated that those with ns often have elevated levels of these as well. there were some other tests that were pretty high as well that i am still working on finding definitions for. m-tp, crp, are both very high. anti-dna ab, anti nuclear, ace both csf and serum, and tnf-a were all missing from my file but the dr said the ace and tnf were also high . my blood work , my co2 is always pretty low, i dont know what that means either. when i try to ask the drs what the csf results mean they say my immune system is attacking my body. well i can get that much, i want to know what those tests mean specifically, if htey are relationship to sarcoidosis etc. or mean something else. no one will answer anything, even in general and i cant really find anything on line and am too tired to look anymore or try to make sense of them if i do find anything.

i hope at my next appt in two weeks i can make the dr really answer some questions but i doubt it. clinic appts here, well, you are seen with about 10 other people walking in every five minutes to get whta they want from the dr. it wont go well.

well take care

kim

ns moderator

Yahoo! TravelFind great deals to the top 10 hottest destinations! ~~~~ *** ~~~ *** ~~~ *** ~~~~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