Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 There is still so much that they dont' know about why we lose the myelin sheath opposite what MS patients do-- I know I had an article on this in the LINKS-- i"ll try to find it. I'm hoping that instead of having to take another pharmacuetical, that we can find ways that isn't going to mean another $$$ of drug copays and doctor visits. After YEARS of prednisone (all my childhood for chronic resp infections) and then high doses when I got sarc 18 yrs ago, and now - intermittently-- needing anti-inflammatories, DMARDS, BRM's, I find that the most success has come from identifing the triggers that poor diet habits (fast food is for workers) no exercise from sitting behind a computer day in and day out, all the side effects of all the meds, has been more effective than most of the drugs. I know if I get wound up-- and start fixating on the stuff that is wrong in my life (um humm, tracie-- you're talking to yourself again..) I can make my pain go through the roof. the panic of not knowing and not having answers sends out the message to my body to send out it warriors (white cells) and protect me. That, in us, means that we now have all those cells looking for a wound (even of the psyci ) and they have to land somewhere- so why not your lungs, or muscles or brain, or eyes. Your immune system doesn't know there is no "real" threat-- and it doesn't shut down like a normal person's. So the next layer of warriors (tnf-a) comes out to clean up the mess left behind by the first wave, and it attaches to those cells, and says ok-- send out the next level (tnf- and that attaches to the first and second wave response and now you have the granuloma. Normal people would be able to have those waves of cells washed out via the liver and kidneys-- but we just get them building up-- and up and up.. So, by id'ing the triggers (our panic, and fear and guilt) and using "stop" thinking techniques-- you can send out the message to your immune system that what you are doing is not a real threat-- and then do some deep breathng and relaxation exercise to clear your mind and disposition. Drop the armored muscles, relax them with some deep breathes- and let that oxygen do what it is supposed to do-- your red blood cells carry oxygen to your body-- so visualize that every cell is being fed clean, healthy, calming energy. Learn to trust that when you get into that panic mode-- you can say "stop!" You know the routine, you know that the pain you feel is not foreign to you, and you have survived it time and again. It's there to tell you that you need to stop and take some deep breathes. It's there to remind you to take care of you. Listen to it! It is a gentle reminder at first, and if you ignore it-- or decide to be frightened by it-- it gets bigger. So listen to it when it is a gentle reminder. Breath deeply, exhale fully, and be at peace. Tracie NS Co-owner/moderator To: Neurosarcoidosis Sent: Wed, January 20, 2010 7:43:37 PMSubject: Re: ScienceDaily: Fish oil given intravenously to patients in intensive care has many benefits, study finds There was a piece written in the Science section of yesterday's NYT. Biogen has a drug ready for trial soon that can repair / grow mylen sheath that covers nerves. The target market is MS patients. I'm not sure if it is helpful or something to keep an eye on during trial. It was interesting to me especially after reading mylen related email in here yesterday From: tiodaat (AT) att (DOT) net <tiodaat (AT) att (DOT) net>Subject: ScienceDaily: Fish oil given intravenously to patients in intensive care has many benefits, study findsTo: neurosarcoidosis@ yahoogroups. comDate: Wednesday, January 20, 2010, 6:49 PM Tracie (Tiodaat (AT) att (DOT) net) has sent you a link to the following page on ScienceDaily:Fish oil given intravenously to patients in intensive care has many benefits, study findshttp://www.sciencedaily.com/releases/2010/01/100118204043.htmA randomized controlled trial of fish oil given intravenously to patients in intensive care has found that it improves gas exchange, reduces inflammatory chemicals and results in a shorter length of hospital stay. Researchers investigated the effects of including fish oil in the normal nutrient solution for patients with sepsis, finding a significant series of benefits.* Note: the sender's email address has not been verified. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 I have to say, after reading what you just wrote, is so very true! It makes sense, by i'ding the triggers and stop "thinking " techniques, and follow up with deep breathing and relaxation techniques. Best of all--it doesn't cost $. We all get so caught up with what next as far as pharmecutical drugs we are told to take by the medical professionals (that it may work, and if if does it will counter-act with other meds we're taking or another ailment will arise, then another set of drugs are introduced, hoping it will not interfere with the ones we're alrady taking, and so on). Such a vicious cycle. As a care-giver, I have to take an anti-depressant and high blood-pressure pills. I'm the one who has just about doubled my weight because I'm frustrated when my husband refuses to take his meds at times or he refuses to eat and so on. So then, when he gets combative with me and tells me I know nothing, I'll go away and feed my face. Anyways, I want to thank you in reminding myself to get my act together and take DEEP breaths along with stop thinking techniques and learn to relax. What's more, is that we're members of the YMCA and have been for several years of which I need to utilize what we're already paying for. Kudos to you, Tracie! From: tiodaat (AT) att (DOT) net <tiodaat (AT) att (DOT) net>Subject: ScienceDaily: Fish oil given intravenously to patients in intensive care has many benefits, study findsTo: neurosarcoidosis@ yahoogroups. comDate: Wednesday, January 20, 2010, 6:49 PM Tracie (Tiodaat (AT) att (DOT) net) has sent you a link to the following page on ScienceDaily:Fish oil given intravenously to patients in intensive care has many benefits, study findshttp://www.scienced aily.com/ releases/ 2010/01/10011820 4043.htmA randomized controlled trial of fish oil given intravenously to patients in intensive care has found that it improves gas exchange, reduces inflammatory chemicals and results in a shorter length of hospital stay. Researchers investigated the effects of including fish oil in the normal nutrient solution for patients with sepsis, finding a significant series of benefits.* Note: the sender's email address has not been verified. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 thanks for all the great info the lack of sex/intimacy is horrible From: tiodaat (AT) att (DOT) net <tiodaat (AT) att (DOT) net>Subject: ScienceDaily: Fish oil given intravenously to patients in intensive care has many benefits, study findsTo: neurosarcoidosis@ yahoogroups. comDate: Wednesday, January 20, 2010, 6:49 PM Tracie (Tiodaat (AT) att (DOT) net) has sent you a link to the following page on ScienceDaily:Fish oil given intravenously to patients in intensive care has many benefits, study findshttp://www.scienced aily.com/ releases/ 2010/01/10011820 4043.htmA randomized controlled trial of fish oil given intravenously to patients in intensive care has found that it improves gas exchange, reduces inflammatory chemicals and results in a shorter length of hospital stay. Researchers investigated the effects of including fish oil in the normal nutrient solution for patients with sepsis, finding a significant series of benefits.* Note: the sender's email address has not been verified. Quote Link to comment Share on other sites More sharing options...
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