Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 Oooohhhh....I'd never admit to drinking that much coffee! Many of my Scleroderma friends have Sjogen's and it isn't very pleasant. I bet they just go by symptoms. I'd love to know if there is a test. rheumatic sjogren's syndrome >From: " Kyla MacKenzie " <celticfox@...> > >Hello all, > >I'm happy to say that even though I'm not on AP, I seem to be in >a remission of sorts from my arthritis. I had that nasty flare >after a severe drug reaction, and the pain in my hips and >shoulders was unbearable for a few months. Now I just get the odd >ache here and there. I guess I keep hoping that the flare was >truly from a reaction to the drug I was taking. Only time will >tell. I still plan to go on AP in the near future, because of my >history of juvenile arthritis. > >Unfortunately, I am have beginning to experience dry mouth, eyes, >skin and another unmentionable place (he he). I've always had >somewhat dry eyes from years of contact lens use, but never like >this. Same with my skin. I've always had very smooth, somewhat >oily skin. But in the past six months the surface had dried out >like crazy, is so dull and cracked looking and feels tight all >the time. > >I fear that I could be developing Sjogren's syndrome, but some >days are better than others, and I'm not sure if that is common. >For awhile, I thought I was just being paranoid, but these >symptoms are beginning to interfere with my life. My dentist told >me months ago that my mouth looked very dehydrated, I told her I >drank coffee all day and rarely any water. So she told me to >drink 8 glasses a day, but it's doing nothing to improve the dry >mouth. > >I'm thinking of asking my family doctor to test me for Sjogren's, >as my rheumy doesn't take any of my problems seriously because my >blood tests are normal. What sort of blood or other tests should >I be asking to have done for Sjogrens? > >Thanks, >Kyla >celticfox@... >http://www.attcanada.net/~celticfox/index.htm >!!!!!!!!!!!!!!!!!!!!!!!!GO LEAFS GO!!!!!!!!!!!!!!!!!!!!!!!! > > > >------------------------------------------------------------------------ >It's finally here! What's your opinion? > >Create a Star Wars discussion group at ONElist. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 1999 Report Share Posted May 27, 1999 Various tests can help in the diagnosis of Sjogren's. One is the Schirmer test where a filter paper strip is placed under each lower eyelid and observing how much of the strip is moistened. Someone with Sjogren's may produce less than a third of the normal amount. There are also tests to evaluate salivary gland secretion. Blood tests can detect abnormal antibodies including SS-B, an antibody highly specific for Sjogren's syndrome. Ethel Donna and Ray wrote: > > From: " Donna and Ray " <mousepotatoes@...> > > Oooohhhh....I'd never admit to drinking that much coffee! > > Many of my Scleroderma friends have Sjogen's and it isn't very pleasant. > > I bet they just go by symptoms. I'd love to know if there is a test. > > rheumatic sjogren's syndrome > > >From: " Kyla MacKenzie " <celticfox@...> > > > >Hello all, > > > >I'm happy to say that even though I'm not on AP, I seem to be in > >a remission of sorts from my arthritis. I had that nasty flare > >after a severe drug reaction, and the pain in my hips and > >shoulders was unbearable for a few months. Now I just get the odd > >ache here and there. I guess I keep hoping that the flare was > >truly from a reaction to the drug I was taking. Only time will > >tell. I still plan to go on AP in the near future, because of my > >history of juvenile arthritis. > > > >Unfortunately, I am have beginning to experience dry mouth, eyes, > >skin and another unmentionable place (he he). I've always had > >somewhat dry eyes from years of contact lens use, but never like > >this. Same with my skin. I've always had very smooth, somewhat > >oily skin. But in the past six months the surface had dried out > >like crazy, is so dull and cracked looking and feels tight all > >the time. > > > >I fear that I could be developing Sjogren's syndrome, but some > >days are better than others, and I'm not sure if that is common. > >For awhile, I thought I was just being paranoid, but these > >symptoms are beginning to interfere with my life. My dentist told > >me months ago that my mouth looked very dehydrated, I told her I > >drank coffee all day and rarely any water. So she told me to > >drink 8 glasses a day, but it's doing nothing to improve the dry > >mouth. > > > >I'm thinking of asking my family doctor to test me for Sjogren's, > >as my rheumy doesn't take any of my problems seriously because my > >blood tests are normal. What sort of blood or other tests should > >I be asking to have done for Sjogrens? > > > >Thanks, > >Kyla > >celticfox@... > >http://www.attcanada.net/~celticfox/index.htm > >!!!!!!!!!!!!!!!!!!!!!!!!GO LEAFS GO!!!!!!!!!!!!!!!!!!!!!!!! > > > > > > > >------------------------------------------------------------------------ > >It's finally here! What's your opinion? > > > >Create a Star Wars discussion group at ONElist. > > ------------------------------------------------------------------------ > What do lizards and rock music have in common? > > They both have communities at ONElist. Find yours today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2002 Report Share Posted May 13, 2002 Gloria, It also effects me worst at night. I also have dry mouth, nose and internal problems. I have great difficulty with constipation. My rheumy has me on Salagen 5mg 3x's a day. It worked good when I first started the medicine, but after 2 months it no longer works. I am looking at some studies for this illness. I am hoping that the AP is all I need for this. Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2002 Report Share Posted May 14, 2002 > I have great difficulty with constipation. Judy Judy,You might want to try Triphala. Highly recommmended by Dr. Weil and I have found it worked to cure my constipation problems. I take 2 tablets 3x/day between meals. Dr. Weil suggests it is the best thing going for getting your colon straightened out and I can't disagree with him. It's an Indian ayurvedic medicine. I use the Planetary Forumulas brand, which contains 2 Grams per serving size (2 tablets). There are other brands, but I have read good things about this brand and it worked for me. You might wish to check out this link - http://www.planetherbs.com/articles/triphala.html ______________ Mark My Home Page Fox Hill Inn My Digital Photos ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.361 / Virus Database: 199 - Release Date: 05/07/2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2002 Report Share Posted November 3, 2002 What is the correct way to pronounce Sjogren's? Sue in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2002 Report Share Posted November 3, 2002 Sjögren's syndrome (pronounced SHOW-grens) is a chronic autoimmune disease which was first identified by a Swedish physician, Henrik Sjögren, in 1933. http://www.pathlights.com/nr_encyclopedia/01genrl6.htm http://www.whonamedit.com/synd.cfm/2100.html Re: [ ] Sjogren's syndrome What is the correct way to pronounce Sjogren's? Sue in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2002 Report Share Posted November 3, 2002 Show-grins, I believe. Love... Tess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2005 Report Share Posted March 24, 2005 Excellent info on Sjogren's Syndrome: http://www.midwestarthritis.com/html/sjogrens.htm Hugs, Jacy ~Of all the things I've lost, I miss my mind the most. jacymail@...IM: jacygal - ICQ: 96949087www.geocities.com/mtn_rose Want a signature like this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2005 Report Share Posted March 24, 2005 ----- Original Message ----- From: Jacy > Excellent info on Sjogren's Syndrome: http://www.midwestarthritis.com/html/sjogrens.htm Except they are wrong about several things. If you have Sjogren's and any other autoimmune disease, it is considered Secondary Sjogren's. They state some diseases (specifically arthritis type diseases). That is incorrect. They do sort of correct themselves later in the article. Also, researchers now believe that you inherit a gene from " each " parent. That's why siblings will get it, but mother and daughter probably won't. Also, they don't even go into organ involvement. They talk about it as if it's dry eyes, dry mouth and parotid and salivary gland involvement only. It's much, much more. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2007 Report Share Posted January 18, 2007 Dr M, I have Sjogren’s syndrome, fibromyalgia, and Scleraderma, (Crest Syndrome). I found out about LDN from a friend with MS when my 20 year old son was diagnosed with MS last year. We are both on LDN. I have to tell you it has helped me in every aspect of my illnesses. I have more energy, no brain fog, my circulation is much much better. I also hurt my back in 2005 and tore a disk and had two bulging disks, which was really taking me down. It took much of that pain away, and took much of the swelling I had in my body away. My balance was very bad, and it is also much much better. I could barely move when getting up from a chair and was bend over from the pain in my back. Now, when I get up, I am pleasantly surprised that there is no pain. I was on plaquinel for the auto immune diseases and norvasc for the circulation as my Reynard’s is very bad. I have quit the plaquinel and have taken very few norvasc this winter. I have chronic problems with my salivary glands, and my parotid gland on one side has been enlarged for about a year and a half. I was on the pregnisone to try to take the swelling out of that. The ldn is keeping it in check, and took down the swelling some. My eye moisture and saliva is better, and I can eat a little bit without drinking water. LDN has giving both my son, myself, and my friend who told us about it, our life back. I don’t think we realize sometimes how bad we really feel because we are busy, and until we feel better we just don’t realize how bad it was. I am so grateful to the people here on the groups, and to my friend, and her friend for sticking their necks out and promoting LDN. My son absolutely feels better than he has for 5 or 6 years. My son was always happy go lucky, and when he started high school I saw a huge difference in his personality, his energy, and well being. I could look at him and know something was wrong. I kept taking him to the doctor and they thought I was crazy. Well, I think he was developing MS, and we did not know it. Now he feels unbelievably wonderful. He works full time, will be graduating with an Associate in Criminal Justice. He wants to open his own restaurant, as the man he works for wants to sell his pizza shop. He feels like he can do anything he wants to. How could I ask for more? I would love to hear from others using LDN for auto immune rheumatic illnesses as my family is loaded with them. I am trying to get my dad to go on LDN for RA. My cousin has acidosis. My brother and his son are diabetics. I truly believe that LDN will help everyone. I would love my other children to take it as a preventative. We could do a study of my family. I have other cousins with the gluten illness, (can’t think of the name). I also have a friend whose daughter has it. Anyway, anyone interested can contact me. Conni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 Dear Conni: Thank you for your wonderful report. I have sent in the prescription for my patient with Sjogren's for LDN, and am very hopeful it will help her. I and my husband have taken it for 2 years and (thank Goddess!) are in great health at 75 and I have everyone I love on it. Especially with a family history of all these autoimmune diseases, I think it is an important prophylaxis. Best wishes, Dr. JM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2007 Report Share Posted January 20, 2007 More positive infor about LDN for your Dr. J -- [low dose naltrexone] Re: Sjogren's Syndrome Dear Conni: Thank you for your wonderful report. Ihave sent in the prescription for my patient withSjogren's for LDN, and am very hopeful it will helpher. I and my husband have taken it for 2 years and(thank Goddess!) are in great health at 75 and I haveeveryone I love on it. Especially with a familyhistory of all these autoimmune diseases, I think itis an important prophylaxis. Best wishes, Dr. JM Quote Link to comment Share on other sites More sharing options...
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