Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Dian, what do they do to diagnose sjogrens? J >From: Dpa1228@... >Reply- onelist > onelist >Subject: Re: [ ] Dizziness >Date: Mon, 16 Aug 1999 18:42:24 EDT >MIME-Version: 1.0 >From errors-165537-5324-shireen42 Mon Aug 16 15:43:29 1999 >Received: from [209.207.164.209] by hotmail.com (2.1) with ESMTP id >MHotMailB981DF1101CED821979AD1CFA4D111030; Mon Aug 16 15:43:29 1999 >Received: (qmail 10652 invoked by alias); 16 Aug 1999 22:42:53 -0000 >Received: (qmail 10619 invoked from network); 16 Aug 1999 22:42:51 -0000 >Received: from unknown (HELO imo21.mx.aol.com) (198.81.17.65) by >pop.onelist.com with SMTP; 16 Aug 1999 22:42:51 -0000 >Received: from Dpa1228@... by imo21.mx.aol.com (mail_out_v22.4.) id >hAWTa20495 (4011) for < onelist>; Mon, 16 Aug 1999 >18:42:29 -0400 (EDT) >Message-ID: <4af5d080.24e9edd0@...> >X-Mailer: AOL 4.0 for Windows 95 sub 21 >Mailing-List: list onelist; contact > -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >From: Dpa1228@... > >Hi > >I've had elevated liver enzymes for 17 years. I was first diagnosed with >AIH(1985), then PSC also(1996). It seems I have an overlap of both. Also >Subacute Cutaneous Lupus Erythematosus and Sjogren's Syndrome (as of 1997). > >My ALT and AST came down dramatically when I started taking prednisone. >Imuran did nothing. Actigall for the PSC lowered all of my enzymes to >almost >normal. I stopped taking it because of the nausea. So, my enzymes are >quite >elevated. > >Dianne A. > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 , Sometimes a biopsy of the lip or salivary glands is taken. They didn't do that with me because of my having SCLE and one of the blood tests (Anti-Ro SSA) was very high which apparently is also a good indicator of Sjogren's. Mine isn't as bad since I finished with my last lupus flare. Dianne A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2000 Report Share Posted April 30, 2000 taken from http://www.elderwyn.com/medicallinks/s.html I will get ya some more info...... when I have caught up. Sjogren's Syndrome British Sjogren's Syndrome Association (BSSA) - registered charity self help group for sufferers of Sjogren's Syndrome. National Sjogren's Syndrome Association - an international, non-profit, organisation dedicated to providing emotional support to patients and their families and educational information to both patients and health care professionals world-wide. ___________________________________ *Medical Resources and Support*http://www.elderwyn.com/medicallinks *Aisha Elderwyn*http://www.elderwyn.com/aisha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2000 Report Share Posted May 1, 2000 Here is some info for you Lynne's Sjogrens Syndrome Page Resources for Sjogren's Syndrome Sjogren's Syndrome VII International Symposium on Sjogren's Syndrome - in Venice, Italy on December 1-4, 1999. Web Directory: Sjogren's Syndrome British Sjogren's Syndrome Association (BSSA) - registered charity self help group for sufferers of Sjogren's Syndrome. National Sjogren's Syndrome Association - an international, non-profit, organization dedicated to providing emotional support to patients and their families and educational information to both patients and health care professionals world-wide. Sjogren's Syndrome Foundation - an autoimmune disease in which the body's immune system mistakes its own moisture producing glands for foreign invaders. Swedish Sjögren Syndrome Association ___________________________________ *Medical Resources and Support*http://www.elderwyn.com/medicallinks *Aisha Elderwyn*http://www.elderwyn.com/aisha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2002 Report Share Posted October 2, 2002 Dear , Sjogrens is an autoimmune disease like AIH. This one primarily attacks moisture producing glands such as saliva. My symptoms seem to be more secondary which include connective tissue swelling and pain. There are several sites on the internet which talk about Sjogrens and it often ocurrs with AIH. My sjogrens is treated the same as my lupus and AIH except that I need to be extra careful with oral health and very dry skin. Good luck! Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2002 Report Share Posted October 2, 2002 Amy, by chance, how did the dry mouth begin? For about 2 weeks now, my mouth has been like "cotton mouth" and it is very frustrating. I drink water and it helps some time....then, it eventually becomes less noticable. Hopefully this is just from allergies...just wondering. Debby [ ] Re: Sjogrens Dear , Sjogrens is an autoimmune disease like AIH. This one primarily attacks moisture producing glands such as saliva. My symptoms seem to be more secondary which include connective tissue swelling and pain. There are several sites on the internet which talk about Sjogrens and it often ocurrs with AIH. My sjogrens is treated the same as my lupus and AIH except that I need to be extra careful with oral health and very dry skin.Good luck!Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 Hi I too suffer enormously with joint pains - they totally disable me - and sometimes like you I have just sat and cried (and I too am not a cryer) because its so relentless. The only slight relief I find is if I get as much sleep as possible ... and try to keep warm (but not hot!). I invariably wake up after about four/five hours sleep, but then usually have a sleep in the day too - whenever my body tells me I need to rest I do. What happened to you with a couple of good weeks happens to me too and the difficulty is in overdoing it when you feel well - a lesson I still haven't learnt!! I was diagnosed with Sjorgrens as well as Lupus/CFS/Fibromyalgia by Dr at the Lupus Clinic at St Hospital back in 2001, after I had paid for a private consultation. He was wonderful and took ALL my medical history, and along with blood tests showing high cholestrol and high ESR came up with his diagnosis. He explained to me that my problem was an autoimmune problem. He basically drew an umbrella and put CFS/Fibro/Sjorgrens/Thyroid/Lupus all under it - and said that was my medical history!!! He said as an NHS patient I could attend his Lupus Clinic and he would like to run some further tests. As you can imagine I was elated - at last I felt I was getting somewhere. BUT my then GP disputed his findings and told me all I had was CFS and to accept my level of disability. He refused to refer me to the Lupus Clinic and I couldn't afford to pay privately. Since moving I have seen another rheumy who again disputed Dr diagnosis and as my blood tests were all fine again said I 'just' had CFS. Eventually I found a Lupus Clinic in Southampton and my new GP agreed to refer me. To be honest it hasn't been much help as they seem to be blood test orientated rather than patient aware as Dr was. I spoke to the consultant last time about the massive amount of weight I have gained whilst not changing my very healthy diet - he just said that I was obviously taking in too many calories and not doing enough exercise - great! Exercise lol - getting up the stairs is like climbing mount everest right now! I weighed around 9 stone for about 20 years and now weigh almost 13 stone ..... must be a hell of a lot of calories in my vegetables!!! Sorry, having a moan!! GRRRrrrr NHS doctors!!!! So rare to find a good one. Wish I was well and could avoid them! Really really hope you have a better day today ... sending you lots of good happy healthy thoughts. Luv Tisha thyroid treatment From: juliamoonrock@...Date: Mon, 30 Mar 2009 08:49:55 +0000Subject: Sjogrens Hi Leah, good to hear from you. I have never had joint pain like this before, though I've had the Sjogrens for some time. I didn't r julia Windows Live just got better. Find out more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 Awww I'm so sorry about the rabbit .... true ... it all comes along at once. Also Ppleased that your pains have subsided a little... and thankfully today for me is not as bad (so far lol) as the last few days! Yeah!!! Sunshine!!! Summer just around the corner! Tisha thyroid treatment From: juliamoonrock@...Date: Mon, 30 Mar 2009 10:10:41 +0000Subject: Sjogrens Hi Tisha, Lordy you have really been through it girl. I sympathise and empathise...... what can I say, I know where you're at... thanks for sharing. my joint pains somewhat diminished today thankfully, but , just found my dear little son's bunny, dead in her hutch. She was the sweetest thing,completely tame and loving....why can't these things,that must be handled really carefully, happen on a 'good' day, sigh. Hope that you are having a good one,enjoy the sun. julia Windows Live Hotmail just got better. Find out more! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 Hi julia, apparently joint pain can be a big problem for sjogren's and you do get flare ups which can worsen things suddenly and considerably... As I understand it the joint pain is caused by inflammation in the joints, so is a different, stronger pain than lack of T3... I know what you mean though, it does seem like it's all just one autimmune disorder and it just varies as to exactly the symptoms you show... I guess you know your body, and if you feel it is adrenal related, then it probably is, at least you have your rheumy referral- you may get something out of it... As far as I am concerned, still feeling pretty much the same, i am having joint pain, but nowhere near as bad as yours sounds, my eyelids are still ripping my corneas every 10 days or so, even though I am using the lacrilube at night. I have the rheumatologist appt thurs and an opthalmologist appt in a few weeks... making the most of my company medical insurance! . Anyway glad to see you are feeling better today... Make sure you give yourself some TLC. Leah ps sorry still can't crop as still on palm x > > > > > Hi Leah, > > good to hear from you. I have never had joint pain like this before, though I've had the Sjogrens for some time. I didn't realise that you could get such rapid 'attacks' with it, but then the gp I see for my Sjogrens is not very clued up on it. I'm hoping that the rheumy is going to be alot more knowledgeable. I still think this attack is adrenal based because I am a stress head at the moment and generally unhappy/scared....... I also think I may have rocked my hormonal boat ( and adrenals) using the Serenity without doing either a hormone or adrenal test (silly).I've got all the symptoms of non T3 uptake... hair loss again, tiredness etc etc .... it's all one big autoimmune issue and so hard to see what's what when I feel like this.Basically I just need to be sooooo vigilant of how I feel/supplements/diet.... if I lose track for even a week I can get myself into a right mess. Easy to be complacent if I have a couple of 'good' weeks.The Sjogrens > and it's symptoms are constant however.Have you had severe attacks of joint pain ? ... and have you had Sjogrens confirmed yet... or is this rheumy gonna do the test ? > > Thanks for posting and the advice.Look forward to hearing what happens with your appointment. > > julia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2009 Report Share Posted December 24, 2009 I also have started on LDN and am a "victim" of Sjogrens, Lupus, Rheumatoid Arthritis, and Autoimmune Hepatitis. I've been on LDN since November 13, 2009 and am finding more saliva in my mouth, no dry throat in the night while sleeping, increased eye moisture, and my joints have stopped hurting 99.9% of the time. If I have a lot of stress (like this past friday night when my son tried to assault me --he came home for Iraq and absolute mess emotionally), then my joints hurt the next day or two. Otherwise, I'm doing great, and I wish every doctor would try every autoimmune "victim" on LDN. It's worth a shot. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2010 Report Share Posted April 14, 2010 have you found anything of interest? have you tried it...if so how are you doing? sometimes folks w/ sjogrens pop up on the LDN lists but i don't see reports of success/failure, just questions. i just read somewhere that N-acetyl cysteine (NAC) is supposed to help with sjogrens... it's good for lots of stuff besides that. > [low dose naltrexone] Sjogrens > > does anyone have any information on Sjogrens and LDN. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2010 Report Share Posted April 15, 2010 I have sjogren’s and have been on ldn for 3.5 years. I have scleroderma as the major disease, and fibromyalgia. I would say that the fibro is gone pretty much and all of its little side issues. I still have some dry mouth and eyes, but nothing like before. I use to get salivary infections several times a year. And have not had any since ldn. I feel like I have my life back. I have tons more energy and I would say that all three diseases definitely stopped in their tracks. Conni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2010 Report Share Posted April 16, 2010 Hi Connie,I have Dermatomyositis and scleroderma - the scleroderma is what worries me most. my hands are very deformed and it happened quickly - i'm hoping someone has the experience where LDN reversed some of the deformity.thanksrachelOn Apr 15, 2010, at 6:50 PM, conni lawrence wrote:I have sjogren’s and have been on ldn for 3.5 years. I have scleroderma as the major disease, and fibromyalgia. I would say that the fibro is gone pretty much and all of its little side issues. I still have some dry mouth and eyes, but nothing like before. I use to get salivary infections several times a year. And have not had any since ldn. I feel like I have my life back. I have tons more energy and I would say that all three diseases definitely stopped in their tracks. Conni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2010 Report Share Posted April 16, 2010 Thanks for the encouraging news. Have printed this and will mail. Shirley LotzFrom: conni lawrence <summerwind1@...>Subject: [low dose naltrexone] Re: Sjogrenslow dose naltrexone Date: Thursday, April 15, 2010, 3:50 PM I have sjogren’s and have been on ldn for 3.5 years. I have scleroderma as the major disease, and fibromyalgia. I would say that the fibro is gone pretty much and all of its little side issues. I still have some dry mouth and eyes, but nothing like before. I use to get salivary infections several times a year. And have not had any since ldn. I feel like I have my life back. I have tons more energy and I would say that all three diseases definitely stopped in their tracks. Conni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2010 Report Share Posted April 16, 2010 I never did get the hand involvement. I have the CREST form…..but only got the R E T problems. I will say that the swelling went totally out of my body…..My fingers, legs, feet….. Conni Quote Link to comment Share on other sites More sharing options...
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