Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 To explain why symptoms come and go--- alot of what we experience is inflammation--- whether it is in a joint, a muscle, lymphnodes, blood vessels, bone marrow--- sarcoidosis is an inflammatory disease. The biggest reason that we end up with problems in one area one day, and it's fine the next is that whenever you have inflammation (swelling, fever, pain) you have a tendency to protect the place that hurts. As we protect one place, we have to compensate for the lack of use of that spot, and the hurt spot gets to rest, but the next day-- the spot that had to compensate is fatigued, and it'll be the painful place next. Tests like ACE--- angiotensin converting enzymes, CRP- Creatine Reacting Protein, ESR- Erythocyte Sedimention Rate-- are all significant markers for inflammation. Although none are specific to sarcoidosis, all show that there is inflammation somewhere. ERS is very significant for rheumatoid arthritis. When your body thinks it has an injury or infection, it sends out extra white cells to heal the injured spot-- these white cells create inflammation-- hence the hot spot feeling or increased fever to an injured spot-- or sick body. This is the first line of defense. The second phase is TNF-a cells, that should clear away the white cells when they are done doing their job. Then comes TNF-b cells, to clear out the TNF-a cells. What is happening is that for us, we make too many TNF-a cells. These glean onto the white cells, but refuse to clear out of our system. So the TNF-b cells gleans on to what is now white cells, tnf-a and tnf-b-- and this concoction hardens, forming granulomas. Since our body thinks that even healthy tissue is in some form of distress-- we end up with granulomas where they shouldn't be. WE also get vasculitis-- inflammation of the blood vessels. If this vessel is in our brains, it may be pressing on a nerve or impeding the function of the area that is not functioning at that time. The next day, the inflammation has reduced, and we have function back-- This process sometimes takes weeks-- where we won't have the full function of an part of our body, and then it clears itself up, and we are better, until the next bout. This is also why the docs put us on immunosuppressants-- as the whole inflammation process starts with our immune systems. So the concept is to block the immune system into not reacting-- and we should feel better. For the newbies, there are a couple of things you can do to reduce inflammation on your own. The first is to make sure you do not allow yourself to become dehydrated. If you are constantly running even a low grade fever-- then your body thinks it needs to save whatever fluid you drink into the lymphs, your hands and feet-- and for all of us-- that ring that fit perfectly yesterday-- is to tight today-- you need fluids! All of our muscle and ligament and joints require synovial fluid to cushion movement. If you are dehydrated-- then the cushion is gone-- and you hurt. For me, it shows first in my lymphnodes-- and the nerve pain that comes from swollen lymphs around my chest and lungs-- is going to get my attention! Loudly! Dehydration also leads to lower blood volume, so naturally- your electrolytes are going to be whacked. If we don't have the electrolytes in balance, then our heart beat can be irregular, we may have leg cramps- (potassium levels may be low) we are fatigued, exhausted, dizzy, unable to think clearly, headachey, etc. Sodas, caffeine, alcohol all add to the problems of dehydration. There is a couple of studies that showed if you get up and breakfast is a donut or sweetroll, or pancakes-- your white cells think that they need to race out and rescue you. Remember-- those white cells are inflammatory. So simple small changes in diet and fluid intake can make huge differences in your pain levels. For those of us on prednisone, -- pred leaches the minerals from your bones-- and it lowers calcium levels drastically-- but the issue is that this creates alot of pain inside your bones-- especially for those of us that have spent years on the stuff. Pred also causes us to retain fluid- so you have swelling of your face, lymphs, hands, feet, toes, fingers-- and that wonderful buffalo hump over your shoulders, along with the belly fat-- which they now know creates it own inflammation. This is one of those damned if ya do, damned if ya don't songs-- I've found that for me, MSM Powder is excellant for the body pain-- and it seems to help with the side effects of the lymphs gone nuts. It's a natural mineral-- and most of us that have tried it, swear by it! Relaxation tapes, guided imagery, deep breathing exercises-- all help to lower pain levels-- primarily by gettng the bad air out of the lungs, and getting clean air in. This is my take on why we end up with the good/bad issues-- I know that the Message Archives have a bunch of posts on this issue- as well as links to articles to support this. You'll see a section on this and every email that is the "Neurosarcoidosis Community" and under that part-- you'll see the links to that part of the group site. Take care, and enjoy a good cup of tea! Tracie NS Co-owenr/moderator To: Neurosarcoidosis Sent: Wed, March 24, 2010 6:57:22 PMSubject: Changes to symptoms Whenever I see my neuro he doesn't really tell me what's going on when he does his little neuro exam. Sometimes I can tell by his expression. But because I've been referred to physio and psych (first appoint yesterday went really well), I've been able to open some envelopes and have a peek at my letters.With a bit of googling I've been able to work out that the clonus test is better than it was. But I still have weakness and numbness all down my left side. Can anyone explain how symptoms come and go etc. My neuro doesn't really tell me anything and everything I know is about MS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 super synopsis tracie i take a product called Synovia for the joint pain and it works great (MSM inside) I have also been expirimenting with supplements: blueberry extract, cinnamon, and turmeric. After reading some of your other notes....I should be adding Milkthistle to the mix. Subject: Re: Changes to symptomsTo: Neurosarcoidosis Date: Thursday, March 25, 2010, 1:08 AM To explain why symptoms come and go--- alot of what we experience is inflammation- -- whether it is in a joint, a muscle, lymphnodes, blood vessels, bone marrow--- sarcoidosis is an inflammatory disease. The biggest reason that we end up with problems in one area one day, and it's fine the next is that whenever you have inflammation (swelling, fever, pain) you have a tendency to protect the place that hurts. As we protect one place, we have to compensate for the lack of use of that spot, and the hurt spot gets to rest, but the next day-- the spot that had to compensate is fatigued, and it'll be the painful place next. Tests like ACE--- angiotensin converting enzymes, CRP- Creatine Reacting Protein, ESR- Erythocyte Sedimention Rate-- are all significant markers for inflammation. Although none are specific to sarcoidosis, all show that there is inflammation somewhere. ERS is very significant for rheumatoid arthritis. When your body thinks it has an injury or infection, it sends out extra white cells to heal the injured spot-- these white cells create inflammation- - hence the hot spot feeling or increased fever to an injured spot-- or sick body. This is the first line of defense. The second phase is TNF-a cells, that should clear away the white cells when they are done doing their job. Then comes TNF-b cells, to clear out the TNF-a cells. What is happening is that for us, we make too many TNF-a cells. These glean onto the white cells, but refuse to clear out of our system. So the TNF-b cells gleans on to what is now white cells, tnf-a and tnf-b-- and this concoction hardens, forming granulomas. Since our body thinks that even healthy tissue is in some form of distress-- we end up with granulomas where they shouldn't be. WE also get vasculitis-- inflammation of the blood vessels. If this vessel is in our brains, it may be pressing on a nerve or impeding the function of the area that is not functioning at that time. The next day, the inflammation has reduced, and we have function back-- This process sometimes takes weeks-- where we won't have the full function of an part of our body, and then it clears itself up, and we are better, until the next bout. This is also why the docs put us on immunosuppressants- - as the whole inflammation process starts with our immune systems. So the concept is to block the immune system into not reacting-- and we should feel better. For the newbies, there are a couple of things you can do to reduce inflammation on your own. The first is to make sure you do not allow yourself to become dehydrated. If you are constantly running even a low grade fever-- then your body thinks it needs to save whatever fluid you drink into the lymphs, your hands and feet-- and for all of us-- that ring that fit perfectly yesterday-- is to tight today-- you need fluids! All of our muscle and ligament and joints require synovial fluid to cushion movement. If you are dehydrated-- then the cushion is gone-- and you hurt. For me, it shows first in my lymphnodes-- and the nerve pain that comes from swollen lymphs around my chest and lungs-- is going to get my attention! Loudly! Dehydration also leads to lower blood volume, so naturally- your electrolytes are going to be whacked. If we don't have the electrolytes in balance, then our heart beat can be irregular, we may have leg cramps- (potassium levels may be low) we are fatigued, exhausted, dizzy, unable to think clearly, headachey, etc. Sodas, caffeine, alcohol all add to the problems of dehydration. There is a couple of studies that showed if you get up and breakfast is a donut or sweetroll, or pancakes-- your white cells think that they need to race out and rescue you. Remember-- those white cells are inflammatory. So simple small changes in diet and fluid intake can make huge differences in your pain levels. For those of us on prednisone, -- pred leaches the minerals from your bones-- and it lowers calcium levels drastically- - but the issue is that this creates alot of pain inside your bones-- especially for those of us that have spent years on the stuff. Pred also causes us to retain fluid- so you have swelling of your face, lymphs, hands, feet, toes, fingers-- and that wonderful buffalo hump over your shoulders, along with the belly fat-- which they now know creates it own inflammation. This is one of those damned if ya do, damned if ya don't songs-- I've found that for me, MSM Powder is excellant for the body pain-- and it seems to help with the side effects of the lymphs gone nuts. It's a natural mineral-- and most of us that have tried it, swear by it! Relaxation tapes, guided imagery, deep breathing exercises-- all help to lower pain levels-- primarily by gettng the bad air out of the lungs, and getting clean air in. This is my take on why we end up with the good/bad issues-- I know that the Message Archives have a bunch of posts on this issue- as well as links to articles to support this. You'll see a section on this and every email that is the "Neurosarcoidosis Community" and under that part-- you'll see the links to that part of the group site. Take care, and enjoy a good cup of tea! Tracie NS Co-owenr/moderator From: rachyanne <stiks11 (AT) hotmail (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Wed, March 24, 2010 6:57:22 PMSubject: Changes to symptoms Whenever I see my neuro he doesn't really tell me what's going on when he does his little neuro exam. Sometimes I can tell by his expression. But because I've been referred to physio and psych (first appoint yesterday went really well), I've been able to open some envelopes and have a peek at my letters.With a bit of googling I've been able to work out that the clonus test is better than it was. But I still have weakness and numbness all down my left side. Can anyone explain how symptoms come and go etc. My neuro doesn't really tell me anything and everything I know is about MS. 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Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Bill, Make sure you add only ONE herb at a time, or one mineral, vitamin, etc-- so that if you have a problem-- you can identify what is causing the problem. Cinnamon is great to help keep blood sugar under control-- studies are proving that it may be very effective, so much so that hopefully, we can utilize it instead of medication or insulin. Any of the antioxidents is so important. Blueberries, cranberries, blackberries-- all are great- both nutritionally and as natural anti imflammatory. Aloe Vera juice is also a great anti-inflammatory. So is licorice and vitamin C- you'll know when you get too much c-- it will cause the runs. Back off until the problem stops, and that is the dose you should be on. As for the Milk Thistle-- it's a must-- and keeping the liver happy is so important. All our meds like to build up and store themself in our liver-- and that is not a good thing. You can get it in capsule form. One thing I have learned is that the recommended dosage is for healthy people. We aren't healthy-- so we need addl amounts. Milk Thistle and MSM will not react with other meds-- so you don't have to worry about getting "too much." Hope this helps Tracie NS Co-owner/moderator To: Neurosarcoidosis Sent: Thu, March 25, 2010 3:30:49 PMSubject: Re: Changes to symptoms super synopsis tracie i take a product called Synovia for the joint pain and it works great (MSM inside) I have also been expirimenting with supplements: blueberry extract, cinnamon, and turmeric. After reading some of your other notes....I should be adding Milkthistle to the mix. From: tracie feldhaus <tiodaat2001@ yahoo.com>Subject: Re: Changes to symptomsTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, March 25, 2010, 1:08 AM To explain why symptoms come and go--- alot of what we experience is inflammation- -- whether it is in a joint, a muscle, lymphnodes, blood vessels, bone marrow--- sarcoidosis is an inflammatory disease. The biggest reason that we end up with problems in one area one day, and it's fine the next is that whenever you have inflammation (swelling, fever, pain) you have a tendency to protect the place that hurts. As we protect one place, we have to compensate for the lack of use of that spot, and the hurt spot gets to rest, but the next day-- the spot that had to compensate is fatigued, and it'll be the painful place next. Tests like ACE--- angiotensin converting enzymes, CRP- Creatine Reacting Protein, ESR- Erythocyte Sedimention Rate-- are all significant markers for inflammation. Although none are specific to sarcoidosis, all show that there is inflammation somewhere. ERS is very significant for rheumatoid arthritis. When your body thinks it has an injury or infection, it sends out extra white cells to heal the injured spot-- these white cells create inflammation- - hence the hot spot feeling or increased fever to an injured spot-- or sick body. This is the first line of defense. The second phase is TNF-a cells, that should clear away the white cells when they are done doing their job. Then comes TNF-b cells, to clear out the TNF-a cells. What is happening is that for us, we make too many TNF-a cells. These glean onto the white cells, but refuse to clear out of our system. So the TNF-b cells gleans on to what is now white cells, tnf-a and tnf-b-- and this concoction hardens, forming granulomas. Since our body thinks that even healthy tissue is in some form of distress-- we end up with granulomas where they shouldn't be. WE also get vasculitis-- inflammation of the blood vessels. If this vessel is in our brains, it may be pressing on a nerve or impeding the function of the area that is not functioning at that time. The next day, the inflammation has reduced, and we have function back-- This process sometimes takes weeks-- where we won't have the full function of an part of our body, and then it clears itself up, and we are better, until the next bout. This is also why the docs put us on immunosuppressants- - as the whole inflammation process starts with our immune systems. So the concept is to block the immune system into not reacting-- and we should feel better. For the newbies, there are a couple of things you can do to reduce inflammation on your own. The first is to make sure you do not allow yourself to become dehydrated. If you are constantly running even a low grade fever-- then your body thinks it needs to save whatever fluid you drink into the lymphs, your hands and feet-- and for all of us-- that ring that fit perfectly yesterday-- is to tight today-- you need fluids! All of our muscle and ligament and joints require synovial fluid to cushion movement. If you are dehydrated-- then the cushion is gone-- and you hurt. For me, it shows first in my lymphnodes-- and the nerve pain that comes from swollen lymphs around my chest and lungs-- is going to get my attention! Loudly! Dehydration also leads to lower blood volume, so naturally- your electrolytes are going to be whacked. If we don't have the electrolytes in balance, then our heart beat can be irregular, we may have leg cramps- (potassium levels may be low) we are fatigued, exhausted, dizzy, unable to think clearly, headachey, etc. Sodas, caffeine, alcohol all add to the problems of dehydration. There is a couple of studies that showed if you get up and breakfast is a donut or sweetroll, or pancakes-- your white cells think that they need to race out and rescue you. Remember-- those white cells are inflammatory. So simple small changes in diet and fluid intake can make huge differences in your pain levels. For those of us on prednisone, -- pred leaches the minerals from your bones-- and it lowers calcium levels drastically- - but the issue is that this creates alot of pain inside your bones-- especially for those of us that have spent years on the stuff. Pred also causes us to retain fluid- so you have swelling of your face, lymphs, hands, feet, toes, fingers-- and that wonderful buffalo hump over your shoulders, along with the belly fat-- which they now know creates it own inflammation. This is one of those damned if ya do, damned if ya don't songs-- I've found that for me, MSM Powder is excellant for the body pain-- and it seems to help with the side effects of the lymphs gone nuts. It's a natural mineral-- and most of us that have tried it, swear by it! Relaxation tapes, guided imagery, deep breathing exercises-- all help to lower pain levels-- primarily by gettng the bad air out of the lungs, and getting clean air in. This is my take on why we end up with the good/bad issues-- I know that the Message Archives have a bunch of posts on this issue- as well as links to articles to support this. You'll see a section on this and every email that is the "Neurosarcoidosis Community" and under that part-- you'll see the links to that part of the group site. Take care, and enjoy a good cup of tea! Tracie NS Co-owenr/moderator From: rachyanne <stiks11 (AT) hotmail (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Wed, March 24, 2010 6:57:22 PMSubject: Changes to symptoms Whenever I see my neuro he doesn't really tell me what's going on when he does his little neuro exam. Sometimes I can tell by his expression. But because I've been referred to physio and psych (first appoint yesterday went really well), I've been able to open some envelopes and have a peek at my letters.With a bit of googling I've been able to work out that the clonus test is better than it was. But I still have weakness and numbness all down my left side. Can anyone explain how symptoms come and go etc. My neuro doesn't really tell me anything and everything I know is about MS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 THANK YOU TRACIE, this was so helpful - why couldn't doctors just tell me that! Rach > > To explain why symptoms come and go--- alot of what we experience is inflammation--- whether it is in a joint, a muscle, lymphnodes, blood vessels, bone marrow--- sarcoidosis is an inflammatory disease. The biggest reason that we end up with problems in one area one day, and it's fine the next is that whenever you have inflammation (swelling, fever, pain) you have a tendency to protect the place that hurts. As we protect one place, we have to compensate for the lack of use of that spot, and the hurt spot gets to rest, but the next day-- the spot that had to compensate is fatigued, and it'll be the painful place next. > Tests like ACE--- angiotensin converting enzymes, CRP- Creatine Reacting Protein, ESR- Erythocyte Sedimention Rate-- are all significant markers for inflammation. Although none are specific to sarcoidosis, all show that there is inflammation somewhere. ERS is very significant for rheumatoid arthritis. > When your body thinks it has an injury or infection, it sends out extra white cells to heal the injured spot-- these white cells create inflammation-- hence the hot spot feeling or increased fever to an injured spot-- or sick body. This is the first line of defense. The second phase is TNF-a cells, that should clear away the white cells when they are done doing their job. Then comes TNF-b cells, to clear out the TNF-a cells. > What is happening is that for us, we make too many TNF-a cells. These glean onto the white cells, but refuse to clear out of our system. So the TNF-b cells gleans on to what is now white cells, tnf-a and tnf-b-- and this concoction hardens, forming granulomas. > Since our body thinks that even healthy tissue is in some form of distress-- we end up with granulomas where they shouldn't be. > WE also get vasculitis-- inflammation of the blood vessels. If this vessel is in our brains, it may be pressing on a nerve or impeding the function of the area that is not functioning at that time. The next day, the inflammation has reduced, and we have function back-- > This process sometimes takes weeks-- where we won't have the full function of an part of our body, and then it clears itself up, and we are better, until the next bout. > This is also why the docs put us on immunosuppressants-- as the whole inflammation process starts with our immune systems. So the concept is to block the immune system into not reacting-- and we should feel better. > For the newbies, there are a couple of things you can do to reduce inflammation on your own. The first is to make sure you do not allow yourself to become dehydrated. If you are constantly running even a low grade fever-- then your body thinks it needs to save whatever fluid you drink into the lymphs, your hands and feet-- and for all of us-- that ring that fit perfectly yesterday-- is to tight today-- you need fluids! > All of our muscle and ligament and joints require synovial fluid to cushion movement. If you are dehydrated-- then the cushion is gone-- and you hurt. For me, it shows first in my lymphnodes-- and the nerve pain that comes from swollen lymphs around my chest and lungs-- is going to get my attention! Loudly! > Dehydration also leads to lower blood volume, so naturally- your electrolytes are going to be whacked. If we don't have the electrolytes in balance, then our heart beat can be irregular, we may have leg cramps- (potassium levels may be low) we are fatigued, exhausted, dizzy, unable to think clearly, headachey, etc. > Sodas, caffeine, alcohol all add to the problems of dehydration. There is a couple of studies that showed if you get up and breakfast is a donut or sweetroll, or pancakes-- your white cells think that they need to race out and rescue you. Remember-- those white cells are inflammatory. So simple small changes in diet and fluid intake can make huge differences in your pain levels. > For those of us on prednisone, -- pred leaches the minerals from your bones-- and it lowers calcium levels drastically-- but the issue is that this creates alot of pain inside your bones-- especially for those of us that have spent years on the stuff.  Pred also causes us to retain fluid- so you have swelling of your face, lymphs, hands, feet, toes, fingers-- and that wonderful buffalo hump over your shoulders, along with the belly fat-- which they now know creates it own inflammation. > This is one of those damned if ya do, damned if ya don't songs-- > I've found that for me, MSM Powder is excellant for the body pain-- and it seems to help with the side effects of the lymphs gone nuts. It's a natural mineral-- and most of us that have tried it, swear by it! > Relaxation tapes, guided imagery, deep breathing exercises-- all help to lower pain levels-- primarily by gettng the bad air out of the lungs, and getting clean air in. > This is my take on why we end up with the good/bad issues-- I know that the Message Archives have a bunch of posts on this issue- as well as links to articles to support this. You'll see a section on this and every email that is the " Neurosarcoidosis Community " and under that part-- you'll see the links to that part of the group site. > > Take care, and enjoy a good cup of tea! > Tracie > NS Co-owenr/moderator > > > > ________________________________ > > To: Neurosarcoidosis > Sent: Wed, March 24, 2010 6:57:22 PM > Subject: Changes to symptoms > >  > Whenever I see my neuro he doesn't really tell me what's going on when he does his little neuro exam. Sometimes I can tell by his expression. But because I've been referred to physio and psych (first appoint yesterday went really well), I've been able to open some envelopes and have a peek at my letters. > > With a bit of googling I've been able to work out that the clonus test is better than it was. But I still have weakness and numbness all down my left side. > > Can anyone explain how symptoms come and go etc. My neuro doesn't really tell me anything and everything I know is about MS. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2010 Report Share Posted March 27, 2010 That helps immensely. Thank you, and I found a store with Milk Thistle From: tracie feldhaus <tiodaat2001@ yahoo.com>Subject: Re: Changes to symptomsTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, March 25, 2010, 1:08 AM To explain why symptoms come and go--- alot of what we experience is inflammation- -- whether it is in a joint, a muscle, lymphnodes, blood vessels, bone marrow--- sarcoidosis is an inflammatory disease. The biggest reason that we end up with problems in one area one day, and it's fine the next is that whenever you have inflammation (swelling, fever, pain) you have a tendency to protect the place that hurts. As we protect one place, we have to compensate for the lack of use of that spot, and the hurt spot gets to rest, but the next day-- the spot that had to compensate is fatigued, and it'll be the painful place next. Tests like ACE--- angiotensin converting enzymes, CRP- Creatine Reacting Protein, ESR- Erythocyte Sedimention Rate-- are all significant markers for inflammation. Although none are specific to sarcoidosis, all show that there is inflammation somewhere. ERS is very significant for rheumatoid arthritis. When your body thinks it has an injury or infection, it sends out extra white cells to heal the injured spot-- these white cells create inflammation- - hence the hot spot feeling or increased fever to an injured spot-- or sick body. This is the first line of defense. The second phase is TNF-a cells, that should clear away the white cells when they are done doing their job. Then comes TNF-b cells, to clear out the TNF-a cells. What is happening is that for us, we make too many TNF-a cells. These glean onto the white cells, but refuse to clear out of our system. So the TNF-b cells gleans on to what is now white cells, tnf-a and tnf-b-- and this concoction hardens, forming granulomas. Since our body thinks that even healthy tissue is in some form of distress-- we end up with granulomas where they shouldn't be. WE also get vasculitis-- inflammation of the blood vessels. If this vessel is in our brains, it may be pressing on a nerve or impeding the function of the area that is not functioning at that time. The next day, the inflammation has reduced, and we have function back-- This process sometimes takes weeks-- where we won't have the full function of an part of our body, and then it clears itself up, and we are better, until the next bout. This is also why the docs put us on immunosuppressants- - as the whole inflammation process starts with our immune systems. So the concept is to block the immune system into not reacting-- and we should feel better. For the newbies, there are a couple of things you can do to reduce inflammation on your own. The first is to make sure you do not allow yourself to become dehydrated. If you are constantly running even a low grade fever-- then your body thinks it needs to save whatever fluid you drink into the lymphs, your hands and feet-- and for all of us-- that ring that fit perfectly yesterday-- is to tight today-- you need fluids! All of our muscle and ligament and joints require synovial fluid to cushion movement. If you are dehydrated-- then the cushion is gone-- and you hurt. For me, it shows first in my lymphnodes-- and the nerve pain that comes from swollen lymphs around my chest and lungs-- is going to get my attention! Loudly! Dehydration also leads to lower blood volume, so naturally- your electrolytes are going to be whacked. If we don't have the electrolytes in balance, then our heart beat can be irregular, we may have leg cramps- (potassium levels may be low) we are fatigued, exhausted, dizzy, unable to think clearly, headachey, etc. Sodas, caffeine, alcohol all add to the problems of dehydration. There is a couple of studies that showed if you get up and breakfast is a donut or sweetroll, or pancakes-- your white cells think that they need to race out and rescue you. Remember-- those white cells are inflammatory. So simple small changes in diet and fluid intake can make huge differences in your pain levels. For those of us on prednisone, -- pred leaches the minerals from your bones-- and it lowers calcium levels drastically- - but the issue is that this creates alot of pain inside your bones-- especially for those of us that have spent years on the stuff. Pred also causes us to retain fluid- so you have swelling of your face, lymphs, hands, feet, toes, fingers-- and that wonderful buffalo hump over your shoulders, along with the belly fat-- which they now know creates it own inflammation. This is one of those damned if ya do, damned if ya don't songs-- I've found that for me, MSM Powder is excellant for the body pain-- and it seems to help with the side effects of the lymphs gone nuts. It's a natural mineral-- and most of us that have tried it, swear by it! Relaxation tapes, guided imagery, deep breathing exercises-- all help to lower pain levels-- primarily by gettng the bad air out of the lungs, and getting clean air in. This is my take on why we end up with the good/bad issues-- I know that the Message Archives have a bunch of posts on this issue- as well as links to articles to support this. You'll see a section on this and every email that is the "Neurosarcoidosis Community" and under that part-- you'll see the links to that part of the group site. Take care, and enjoy a good cup of tea! Tracie NS Co-owenr/moderator From: rachyanne <stiks11 (AT) hotmail (DOT) com>To: Neurosarcoidosis@ yahoogroups. comSent: Wed, March 24, 2010 6:57:22 PMSubject: Changes to symptoms Whenever I see my neuro he doesn't really tell me what's going on when he does his little neuro exam. Sometimes I can tell by his expression. But because I've been referred to physio and psych (first appoint yesterday went really well), I've been able to open some envelopes and have a peek at my letters.With a bit of googling I've been able to work out that the clonus test is better than it was. But I still have weakness and numbness all down my left side. Can anyone explain how symptoms come and go etc. My neuro doesn't really tell me anything and everything I know is about MS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2010 Report Share Posted April 6, 2010 For me it's all about how tired I am, If I'm really tired or over did the day, then my symptoms are worse. When I get some sleep, they get better, however they slower continued to get worse. Once I got on medication, which has been changed through the years, it gets better for awhile. Then we switch the medication again. When our body attacks itself we end up with granulomas, and they become inflamed, thus causing the symptoms. I am numb all down the left side too, and have been for years, then my walking become a problem, and my meds were again changed, I am now on Remicade, Methotrexate, and Plaquanil, but I still have an increase in symptoms when tired or wore out, or emotional stress. Right now my 14 yo daughter is an emotional stress, and each day is different. I don't know it that helped. but basically our symptoms are related to the position of the granulomas, and how inflamed they are. hope this is helps some. Marla   Whenever I see my neuro he doesn't really tell me what's going on when he does his little neuro exam. Sometimes I can tell by his expression. But because I've been referred to physio and psych (first appoint yesterday went really well), I've been able to open some envelopes and have a peek at my letters. With a bit of googling I've been able to work out that the clonus test is better than it was. But I still have weakness and numbness all down my left side. Can anyone explain how symptoms come and go etc. My neuro doesn't really tell me anything and everything I know is about MS. Quote Link to comment Share on other sites More sharing options...
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