Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 TN is Tumor Necrosing Factor--B cell proteins are the ones that we seem to produce to much of--- and is what they try to suppress with all the immunosuppressants. Although they haven't yet decided this is a true diagnosis of sarcoidosis-- since it can be elevated in multiple autoimmune diseases (Crohns, RA, Lupus, ) it can be a good indicator that your body isn't clearing out the cycle of white blood cells that come into play when we get sick. I suspect it's time for a PFT--- Pulmonary Function Test-- and they need to pay special attention to the DLCO--Diffuse Lung Capacity Oxygenation. Decreased DLCO shows that you either have lung scarring and a subsequent lowering of the amount of oxygen that your body is getting. It can tell them if you need oxygen supplementation, and that alone can slow or stop the progression from ending up with pulmonary hypertension. (Just beginning to learn about this one myself..) Have they done ANA - anti-nuclear antibodies blood tests, along with IGGA tests? These can show signs of autoimmune diseases-- and can be specific to certain types of AI diseases-- so they make for a good "rule-out" the other stuff tests. Glucose, (A1C), CRP- C-Reactive Protein (shows inflammation systemically) ESR, E?sedimentation rate (again inflammation, good for dx arthritis) are all good places to get baseline studies-- so that if you need to go back on immunosuppressants, they can check in 6 months to see how you are responding. One thing most our MD's do is look at DLCO and check to see if it balances out with correction for lung volume. What this means is that if you've lost 20% of your lung volume, then your lungs can adjust (the other lobes pick up the slack) and they work harder to get that 20% back. The problem with this is that if you lose 40 or 60% lung capacity-- the other lobes have to work at their normal rate of 100% function plus make up that 40% you're not getting from the diseased lunglobe. So it really is important that they look at that figure without correction. there isa test called a TN-b. What is that for? What would it show? I see myPCP in about 6 weeks for more blood work and I would like to add that ifit is something that might help.It's Tax Time! Get tips, forms and advice on AOL Money Finance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 TN is Tumor Necrosing Factor--B cell proteins are the ones that we seem to produce to much of--- and is what they try to suppress with all the immunosuppressants. Although they haven't yet decided this is a true diagnosis of sarcoidosis-- since it can be elevated in multiple autoimmune diseases (Crohns, RA, Lupus, ) it can be a good indicator that your body isn't clearing out the cycle of white blood cells that come into play when we get sick. I suspect it's time for a PFT--- Pulmonary Function Test-- and they need to pay special attention to the DLCO--Diffuse Lung Capacity Oxygenation. Decreased DLCO shows that you either have lung scarring and a subsequent lowering of the amount of oxygen that your body is getting. It can tell them if you need oxygen supplementation, and that alone can slow or stop the progression from ending up with pulmonary hypertension. (Just beginning to learn about this one myself..) Have they done ANA - anti-nuclear antibodies blood tests, along with IGGA tests? These can show signs of autoimmune diseases-- and can be specific to certain types of AI diseases-- so they make for a good "rule-out" the other stuff tests. Glucose, (A1C), CRP- C-Reactive Protein (shows inflammation systemically) ESR, E?sedimentation rate (again inflammation, good for dx arthritis) are all good places to get baseline studies-- so that if you need to go back on immunosuppressants, they can check in 6 months to see how you are responding. One thing most our MD's do is look at DLCO and check to see if it balances out with correction for lung volume. What this means is that if you've lost 20% of your lung volume, then your lungs can adjust (the other lobes pick up the slack) and they work harder to get that 20% back. The problem with this is that if you lose 40 or 60% lung capacity-- the other lobes have to work at their normal rate of 100% function plus make up that 40% you're not getting from the diseased lunglobe. So it really is important that they look at that figure without correction. there isa test called a TN-b. What is that for? What would it show? I see myPCP in about 6 weeks for more blood work and I would like to add that ifit is something that might help.It's Tax Time! Get tips, forms and advice on AOL Money Finance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 Tracie, Thanks for the info. I have not had the TNF-B and will ask about it. I am going to ask for PFT soon also. I have had multiple positive ANA's over the last 10 years with a speckled pattern. I had a positive c reactive protein; I was not told about this. I happened to find it in some copies of medical records. I had oligliclonal bands in the first LP I had but all mri's have been negative to date. My parotid glands are always a lttle enlarged but when one was biopsied it can back negative for sarcoid. When I had shingles on my face, the parotid was the size of an egg. We just assumed it was a lymph node but it wasn't. Thank you so much for your advice. In my area you have to be your own advocate. They are not going to continue to look for a dx but just treat the symptoms. Terri G. > > TN is Tumor Necrosing Factor--B cell proteins are the ones that we seem to > produce to much of--- and is what they try to suppress with all the > immunosuppressants. > Although they haven't yet decided this is a true diagnosis of sarcoidosis-- > since it can be elevated in multiple autoimmune diseases (Crohns, RA, Lupus, > ) it can be a good indicator that your body isn't clearing out the cycle of > white blood cells that come into play when we get sick. > I suspect it's time for a PFT--- Pulmonary Function Test-- and they need to > pay special attention to the DLCO--Diffuse Lung Capacity Oxygenation. > Decreased DLCO shows that you either have lung scarring and a subsequent lowering > of the amount of oxygen that your body is getting. It can tell them if you > need oxygen supplementation, and that alone can slow or stop the progression > from ending up with pulmonary hypertension. (Just beginning to learn about this > one myself..) > Have they done ANA - anti-nuclear antibodies blood tests, along with IGGA > tests? These can show signs of autoimmune diseases-- and can be specific to > certain types of AI diseases-- so they make for a good " rule-out " the other > stuff tests. > Glucose, (A1C), CRP- C-Reactive Protein (shows inflammation systemically) > ESR, E?sedimentation rate (again inflammation, good for dx arthritis) are all > good places to get baseline studies-- so that if you need to go back on > immunosuppressants, they can check in 6 months to see how you are responding. > One thing most our MD's do is look at DLCO and check to see if it balances > out with correction for lung volume. What this means is that if you've lost > 20% of your lung volume, then your lungs can adjust (the other lobes pick up > the slack) and they work harder to get that 20% back. > The problem with this is that if you lose 40 or 60% lung capacity-- the > other lobes have to work at their normal rate of 100% function plus make up that > 40% you're not getting from the diseased lunglobe. So it really is important > that they look at that figure without correction. > > > > In a message dated 3/11/2008 11:08:31 A.M. Pacific Daylight Time, > mosaicgirl1@... writes: > > there is > a test called a TN-b. What is that for? What would it show? I see my > PCP in about 6 weeks for more blood work and I would like to add that if > it is something that might help. > > > > > > **************It's Tax Time! Get tips, forms, and advice on AOL Money & > Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 Tracie, Thanks for the info. I have not had the TNF-B and will ask about it. I am going to ask for PFT soon also. I have had multiple positive ANA's over the last 10 years with a speckled pattern. I had a positive c reactive protein; I was not told about this. I happened to find it in some copies of medical records. I had oligliclonal bands in the first LP I had but all mri's have been negative to date. My parotid glands are always a lttle enlarged but when one was biopsied it can back negative for sarcoid. When I had shingles on my face, the parotid was the size of an egg. We just assumed it was a lymph node but it wasn't. Thank you so much for your advice. In my area you have to be your own advocate. They are not going to continue to look for a dx but just treat the symptoms. Terri G. > > TN is Tumor Necrosing Factor--B cell proteins are the ones that we seem to > produce to much of--- and is what they try to suppress with all the > immunosuppressants. > Although they haven't yet decided this is a true diagnosis of sarcoidosis-- > since it can be elevated in multiple autoimmune diseases (Crohns, RA, Lupus, > ) it can be a good indicator that your body isn't clearing out the cycle of > white blood cells that come into play when we get sick. > I suspect it's time for a PFT--- Pulmonary Function Test-- and they need to > pay special attention to the DLCO--Diffuse Lung Capacity Oxygenation. > Decreased DLCO shows that you either have lung scarring and a subsequent lowering > of the amount of oxygen that your body is getting. It can tell them if you > need oxygen supplementation, and that alone can slow or stop the progression > from ending up with pulmonary hypertension. (Just beginning to learn about this > one myself..) > Have they done ANA - anti-nuclear antibodies blood tests, along with IGGA > tests? These can show signs of autoimmune diseases-- and can be specific to > certain types of AI diseases-- so they make for a good " rule-out " the other > stuff tests. > Glucose, (A1C), CRP- C-Reactive Protein (shows inflammation systemically) > ESR, E?sedimentation rate (again inflammation, good for dx arthritis) are all > good places to get baseline studies-- so that if you need to go back on > immunosuppressants, they can check in 6 months to see how you are responding. > One thing most our MD's do is look at DLCO and check to see if it balances > out with correction for lung volume. What this means is that if you've lost > 20% of your lung volume, then your lungs can adjust (the other lobes pick up > the slack) and they work harder to get that 20% back. > The problem with this is that if you lose 40 or 60% lung capacity-- the > other lobes have to work at their normal rate of 100% function plus make up that > 40% you're not getting from the diseased lunglobe. So it really is important > that they look at that figure without correction. > > > > In a message dated 3/11/2008 11:08:31 A.M. Pacific Daylight Time, > mosaicgirl1@... writes: > > there is > a test called a TN-b. What is that for? What would it show? I see my > PCP in about 6 weeks for more blood work and I would like to add that if > it is something that might help. > > > > > > **************It's Tax Time! Get tips, forms, and advice on AOL Money & > Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) > Quote Link to comment Share on other sites More sharing options...
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