tag:blogger.com,1999:blog-5524669059874959054.post2793405066365713357..comments2023-07-11T00:45:41.436-08:00Comments on Sjogrens & Me: SSA and SSB antibodiesVickyhttp://www.blogger.com/profile/03637013340045655467noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-5524669059874959054.post-77342776267332629912012-03-08T10:08:09.444-09:002012-03-08T10:08:09.444-09:00I sit possible to have Sjogrens and still have a n...I sit possible to have Sjogrens and still have a negative ANA test? I am at my wits end. I have every symptom (fatigue, fog, fibromialgia, osteoarthritis, extremely dry eye/mouth), but only my opthamologist and dentist think I have it. My internist did the ANA and said i don't have it. I also have IgA and IgM deficiency. I just keep feeling sicker.Lookingforanswershttps://www.blogger.com/profile/00667050982733924688noreply@blogger.comtag:blogger.com,1999:blog-5524669059874959054.post-74131556922171570182011-10-27T10:28:02.688-08:002011-10-27T10:28:02.688-08:00Just a QUESTION? What is considered high levels of...Just a QUESTION? What is considered high levels of SSA or SSB? My Dr just had me tested, and I got the result, but have no CLUE how to read it? I've been suffering with severe dry-eye for a year now....Kerihttps://www.blogger.com/profile/12765931278643690472noreply@blogger.comtag:blogger.com,1999:blog-5524669059874959054.post-92112629225080574162011-05-15T15:08:44.928-08:002011-05-15T15:08:44.928-08:00i have sjogrens syndrome with positive ssa a ssb a...i have sjogrens syndrome with positive ssa a ssb antibodies i do be tired a lot i have my good a bad days i have both of my duck drain in my eyes laser closed and my mouth is very dry i have to eat a lot of sofe food i drink a lot of water and have a lot of trouble with my nose as it very dry i have a large hole in my nose and have tryed to get it closed but it wont stich toghter because it to dry from the siogrens it bleeds every day i wish it would all go a way as no one knows of siogrens syndrome theresatheresahttps://www.blogger.com/profile/01268013861935230927noreply@blogger.comtag:blogger.com,1999:blog-5524669059874959054.post-71520188226663160942011-05-11T08:11:22.046-08:002011-05-11T08:11:22.046-08:00I was diagnosed with Sjogrens 3 years ago and luck...I was diagnosed with Sjogrens 3 years ago and luckily the only symptom I currently have is fatigue. From time to time I feel flu-like symptoms but they go away within a few hours. My biggest concern is having children. I'm 31 and would love to start a family, but I'm SSA and SSB positive so this makes me apprehensive.Christinehttps://www.blogger.com/profile/04494151162877556179noreply@blogger.comtag:blogger.com,1999:blog-5524669059874959054.post-89268792023724832542011-03-22T07:11:56.713-08:002011-03-22T07:11:56.713-08:00HI there! My name is Rose. I am married with thre...HI there! My name is Rose. I am married with three kids and I still can't believe it, but I found out I'm pregnant. <br /><br />As I do have SSA positive sjogren's and I am turning 42 in April, this was not as they say "planned." <br /><br /> Because I had heart failure with with my third, Sarah Kate, in '04 there is serious risk of heart failure during or after this pregnancy. This is so insane. I've placed the whole thing in God's hands, but I still feel like I am swimming through a pool of aligators.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5524669059874959054.post-25015534434624335752011-03-08T06:45:42.314-09:002011-03-08T06:45:42.314-09:00Hi there!
I was diagnosed with Sjogren's due ...Hi there!<br /><br />I was diagnosed with Sjogren's due to my daughter, out third child, having heart block. Thank God, but we were able to reverse the heart block during my pregnancy. As far as we know we are the first case to have ever done this. My question is I would really like to start a support group for parents who are scared to get pregnant. I also would like to get more funding for the study we were in because it CAN be reversed! I just have no clue where to start. This blog is the first I have really come across. Please let me know if you can. By the way this is amazing that you are doing this!!Katiehttps://www.blogger.com/profile/14429350415508501587noreply@blogger.comtag:blogger.com,1999:blog-5524669059874959054.post-53686319815212105162010-11-20T11:15:06.136-09:002010-11-20T11:15:06.136-09:00I was diagnosed with Sjogren's when my second ...I was diagnosed with Sjogren's when my second child was 6 mths. old. I was unable to move with out pain and could not hold my baby. A few months ago I began researching diet and sjogren's and i found some common links among gluten and grains. I eventually eliminated ALL starches (not fruits or veggies) from my diet. I loosely follow the SC diet which can be found on www.scdiet.com. Basically, it means no potatoes, rice, oats, barley, wheat, corn, etc. Anyway, I have been completely sypmptom free since starting the diet and I'm off all of my medications and I'm 3 months pregnant with my 3rd. child. I hope everyone can give this diet a try and see if it helps. Even just a day or two of cutting out all starches should give you an idea of whether or not it will work. Now I'm able to eat a little starch with some meals and I just suffer some mild pain/discomfort in the evenings but it doesn't interrupt my sleep the way it used to and it's gone by morning. Please let me know if this helps anyone else!!stephanie teaguehttps://www.blogger.com/profile/10240523020520507145noreply@blogger.comtag:blogger.com,1999:blog-5524669059874959054.post-56663951521244043942010-11-20T11:07:57.122-09:002010-11-20T11:07:57.122-09:00I was diagnosed with Sjogren's Syndrome when m...I was diagnosed with Sjogren's Syndrome when my second child was 6mths. old. Several months ago I began researching diet and Sjogren's. Loooong story short: I have eliminated ALL Starches (potatoes, oats, all forms of grains: corn, wheat, barley, quinoa, etc.I loosely follow the SC Diet from www.scdiet.com) from my diet and now I'm completely symptom free and off my medications. This time last year I was unable to move without being in extreme pain from inflammation of my connective tissue and now I am 3 mths pregnant with my 3rd. child and feeling wonderful. I hope that you all will try this diet! even 2-3 days of cutting out starches should help you notice a difference. Please let me know if this helps anyone!!!stephanie teaguehttps://www.blogger.com/profile/10240523020520507145noreply@blogger.comtag:blogger.com,1999:blog-5524669059874959054.post-40234606450558681092010-07-28T23:42:36.461-08:002010-07-28T23:42:36.461-08:00Hello, i suffer from dry mouth, eyes and vagine fo...Hello, i suffer from dry mouth, eyes and vagine for 3 months. nos it is getting better in my mouth and i have more saliva. But my eyes are dry from time to time and i have blurry vision. My doc test me for ANA, SSA and SSb - all are negative, the eye test as well. The scintigraphia did not show Sjogren. But i have always had lots of saliva in my mouth and eyes and now it is not so much. I wonder do i have Sjogren or not.ninahttps://www.blogger.com/profile/11952905823346061074noreply@blogger.comtag:blogger.com,1999:blog-5524669059874959054.post-22698864673733549322010-06-13T14:31:26.894-08:002010-06-13T14:31:26.894-08:00I was just diagnosed with having Sjogren's syn...I was just diagnosed with having Sjogren's syndrome and Hepatitus c.<br />Is it very likely I'll need a kidney or liver transplant someday?Larryhttps://www.blogger.com/profile/01358195772900898181noreply@blogger.comtag:blogger.com,1999:blog-5524669059874959054.post-29649185352094524612009-12-05T17:16:47.108-09:002009-12-05T17:16:47.108-09:00Martha, I have experienced everything you are talk...Martha, I have experienced everything you are talking about but the good news for me was that if i was patient, things would improve and move on to a new set of confusing symptoms. It is frustrating that test results will be positive for something and then later revert to normal. I have been going through this for 20 years now and a very smart dr. advised me not to get hung up on what you call it but how to get it under control. While confirmed for Sjorgren's it appears my overlapping symptoms are really mixed connective tissue disease and the treatment doesn't vary between them, your medical team has to help you improve the quality of your life. good luck to you, i would be so happy if my family just undestood what i go through from time to time.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5524669059874959054.post-37623371852514278892009-06-18T06:37:44.825-08:002009-06-18T06:37:44.825-08:00Hi. female 51, very healthy until feb. my mouth b...Hi. female 51, very healthy until feb. my mouth began burning like scaled. in april, lost feeling in arms and legs and could barely breathe, ended up in ER. all test dont show Lupus or Sjogrens but high ANA, liver messed up, potassium way low, irregular heat beat, 3 nodules in lungs, brusing uncontrolled, lost 15 lbs, and diabetic overnight but i'm skinny. Can u have Sjogrens and have tested negative?MarthabZamhttps://www.blogger.com/profile/06487028457743082978noreply@blogger.comtag:blogger.com,1999:blog-5524669059874959054.post-72885822783254464162009-03-29T05:42:00.000-08:002009-03-29T05:42:00.000-08:00Hi Denise! Yes, it can be tough at times. We have ...Hi Denise! Yes, it can be tough at times. We have God, our family, and friends to get us through the bad days. Thanks goodness there are more good days then bad. Thanks for coming by.Vickyhttps://www.blogger.com/profile/03637013340045655467noreply@blogger.comtag:blogger.com,1999:blog-5524669059874959054.post-68455763709188317082009-03-28T09:18:00.000-08:002009-03-28T09:18:00.000-08:00I have sjogrens and fibromyalgia. Its a tough road...I have sjogrens and fibromyalgia. Its a tough road, but you already know that. I will pray for you and hope you get a call soon for your kidney transplant.Denise @ Sunflowers, Chocolate and Little Boyshttps://www.blogger.com/profile/14699534143217246831noreply@blogger.comtag:blogger.com,1999:blog-5524669059874959054.post-69306814326560957042009-03-26T16:44:00.000-08:002009-03-26T16:44:00.000-08:00Welcome erbegu6580 and The Faithful Girl! I get e...Welcome erbegu6580 and The Faithful Girl! I get excited when I see others newbies come on and comment. Thanks.<BR/><BR/>erbegu6580, I wish you the best of luck on your results. Keep me posted. What are the reasonings for them wanting to do a kidney biopsy? You can email me privately if you'd like.<BR/><BR/>The Faithful girl....there seems to be more and more of us lately. I appreciate your comments and feedback.Vickyhttps://www.blogger.com/profile/03637013340045655467noreply@blogger.comtag:blogger.com,1999:blog-5524669059874959054.post-62204349350542702312009-03-26T13:02:00.000-08:002009-03-26T13:02:00.000-08:00I was just diagnosed with Sjogrens and I am glad t...I was just diagnosed with Sjogrens and I am glad to be finding other people who are living with the disease. Love your blog!Faithfulhttps://www.blogger.com/profile/04973907253846958614noreply@blogger.comtag:blogger.com,1999:blog-5524669059874959054.post-17302924898160479912009-03-25T11:14:00.000-08:002009-03-25T11:14:00.000-08:00I don't have a good explanation of these antibodie...I don't have a good explanation of these antibodies. I just know I have high counts of both! I seem to have a lot of the same issues as you, I just had a kidney biopsy last week because and I was officially diagnosed with Sjogren's a few weeks ago (although my ophthalmologist has suspected it for a few years). I'm hoping for good news tomorrow when I go in for the biopsy results. Congrats on being activated on the transplant list!Anonymousnoreply@blogger.com