Guest guest Posted July 15, 2007 Report Share Posted July 15, 2007 yeah, well the vision is going!! Sorry, I meant regular old sarcoidosis. The kind that starts in your lung/lymph nodes and then wanders. Bonnie BGet a sneak peak of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2007 Report Share Posted July 15, 2007 Rose, this is my question. Can this be from the neuropathy?? I have had joint pain with sarc since early on. It seems to like certain joints fro awhile and then go to other ones. Like for me, my hands were first, then my hips for about 18 months/ 2yrs. Now it's my feet and hands. I don't know which hurt me more. I just don't want to waste time going to the wrong doctor for this. Not that I want to go to see any of em. Bonnie BGet a sneak peak of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2007 Report Share Posted July 15, 2007 my pulmonary sarc has not been the big issue. My muscles and nerve pain started after I got off my first round of steroids and I have never gone back on them since. I guess my sarc is mild compared to most, but not to me. I'm the one who has to live with the symptoms. Bonnie, we all deserve to be comfortable, and that muscle and bone pain, as well as the nerve pain is nasty--at best. Sarcoidosis hardens the muscles, and the body wants to protect itself, so we "guard" the area by tightening up around it, cutting off the circulation, and that increases the pain. It also makes it so that you aren't getting the oxygen to the muscles, so they can't heal. As for the nerve stuff- if you've not tried the MSM-- do so. Watch your sugars, and hydration. It took me keeping a diary of what I ate and drank for a week for me to see what I was doing-- and what i had to change. But it has helped, tremendously. Hugs, TracieGet a sneak peak of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2007 Report Share Posted July 15, 2007 Rosie, I may be wrong, but I think she meant "regular old sarc"...... Hugs, Darlene NS Co-Owner/Moderator ----- Original Message ----- From: Rose Bonnie, I don't if this was a typo, but I've been going nuts trying to figure out what it is! refular ol sarc Hope you can clear this up for me. Thanks! Ramblin' Rose Moderator .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2007 Report Share Posted July 15, 2007 Dr. Ritchie Shoemaker's recommendation to take cholestyramine (for my mold illness) made a huge difference for me, but I was still lving in the mold and soon I had to start moving and during that time many other symptoms got worse but the feet numbness neuropathy didn't.. Then I got out and those symptoms started to improve.. The cholestyramine has proven to be a godsend for me.. seriously.. Its made a huge difference. I don't know if this would work for (neuro)sarcoidosis, but there is a logic to it possibly working to help and that is this. (Bear in mind I am not a doctor and this is just a HUNCH) Dead cells need to be removed by other cells and those cells need to die in the process. Those dead and dying cells cause a rise in inflammatory cytokines and they probably also cause the release of toxins from the necrosis process. Those toxins might circulate in the body and end up in enterohepatic recirculation (released in bile from liver to gall bladder to gut then re-absorbed) , which would cause further inflammation and cell death. (That IS what happens with mycotoxins and many other biotoxins. It also happens with endotoxins like LPS - which strongly potentiate the damage from mycotoxins.) SO - the cholestyramine would - or DOES, I am pretty sure, clear them out, lowering the overall inflammation level. This is just a guess but I am finding that cholestyramine is a godsend for me because it KEEPS MY INFLAMMATION LEVEL DOWN.. Maybe that is from mold, but everything I have read suggests that cholestyramine may be useful in other situations too. Hell, its a benign drug and it would be something a doctor would prescribe for anyone whose cholesterol is over 200, Ive heard.. so it might be worth trying? I am also almost positive that cholestyramine is safe for most people BUT *YOU NEED TO ASK YOUR DOCTORS*Dr. Shoemaker has people take it four times a day but IT GETS PEOPLE " S INFLAMMATION DOWN... I really suspect VERY strongly that a significant number of people with the worst, most difficult cases of mold illness may have neurosarcoidosis. People like me.. I got very, very ill with chills and the whole bit as many people here describe.. I was sick for a year - I had sores all through my mouth and nose and face I thought it was asecondary infection from MAJOR acid reflux that I was having.. (the building turned out to have major stachy infestation and stachy is cytotoxic, so that is consistant with that..) This is actually something which a GOOD sarcoidosis doctor should STUDY, because it is not something people want to be trying to figure out themselves. God knows I am already way over my head just trying to figure out what is wrong with me. BUT MY OWN DOCTORS NEVER HAD EVEN SUGGESTED I MIGHT HAVE NEUROSARCOIDOSIS or mold illness for that matter. I had to figure out what I have comepletely by myself with help from reading a few peoples sites on the net like moldwarriors.com for the mold illness.. and PubMed to search abstracts and papers.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2007 Report Share Posted July 16, 2007 Rose, My feet just hump constantly all day long. From the time I get up I have a hard time taking the first step and big thick padded socks make them feel so much better. I have been wearing flip flops and now I am in extreme pain where I have a hard time walking most especially since I am on my feet a lot with work and trying to garden. I do not have any arches to speak of so any kind of shoe makes them hurt. I do rub sunbreeze into them and I also have this advil cream with no scent and herbs which helps somewhat with the constant thumping. KatGet a sneak peek of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2007 Report Share Posted July 16, 2007 I have had joint pain with sarc since early on. It seems to like certain joints fro awhile and then go to other ones. Like for me, my hands were first, then my hips for about 18 months/ 2yrs. Now it's my feet and hands. I don't know which hurt me more. I just don't want to waste time going to the wrong doctor for this. Bonnie, You need to see a Rheumatoligist for the joint pain. This is sarcoid induced arthritis. The neurologist would be the one to see if this was nerve pain- the burning, tingling, numbness, loss of balance issues. Hugs, TracieGet a sneak peek of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 yeah, i should go back to see her. she will not treat me systemically for sarc, but will treat me with pain pills for joint pain. Thanks, Bonnie BGet a sneak peek of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
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