Lab test neg for sjogrens

Posted , 10 users are following.

I too am like Susan. I have hashimotos, hypothyroiditis. I am beyond discouraged. I can't find the correct avenue to get help. I have no insurance but am being seen for my hashi and general health by a family practice group and Im on a grant I qualified for. I did, however, have to pay out of pocket for this test as it was not covered by this program.

My Ss-A and Ss-B results both came back <1 neg. . My symptoms are worse than theyve ever been. Extreme dry mouth, dry, gritty eyes, very dry skin, peeling feet, enlarged tongue, mouth sores, extreme sleepiness, fatigue. My dentist noticed my tongue issue and my opthamalogist saw that I have dry eyes and suggested beung tested again for Sjogrens. Im going in to my Dr in the morning for him to tell me the neg results. Where do I go from here? I am so sick and tired of feeling this way and complaining of my symptoms so others can understand why I cant or dint feel like doing something. I cannot make it through the day without a nap or two which has never been my norm. Im afraid I sound like a hypochondriac and hitting brick walls everytime I set out to find out what's wrong. Since losing my insurance i know longer am able to access the care I previously had nor afford to. I gave oretty much stayed to myself and isolated myself most of the time except for necessary trips. My husband is out of town weeks and month at a time. I feel so horrible about myself. Im 60

0 likes, 14 replies

14 Replies

  • Posted

    Hi Leslie,

    So sorry for your troubles. It seems like so many on here are having that same issues. I have been diagnosed as having Sjogrens but sometimes my blood work shows I have no illness. I have other autoimmune diseases but right now they do not know what they are. I have been so horribly sick. Today I went to an orthopedic for my knees & hip, my leg is turning in & I fall. The pain is excruciating (I had injections today) this just all came out of the blue, I have had a lot of problems with the heart (doctors feel that all my sicknesses are due to the autoimmune diseases) next month I see a new rheumatologist (the other did not work out for me) I know it is very easy to get discouraged & it’s even more so when you cannot do the things you want or use to do.... I hope things get better for you.

    take care

  • Posted

    I don't know about you, but I often wonder if a salt-sensitivity/intolerance could lead to some of your dryness, which I experience, as well.  My symptoms are not consistently bad, but I have spells that are pretty intense.  I often wonder about this, especially when I get more symptoms when I mess up and stray from my low-sodium diet.  Who knows, perhaps it's just me...

  • Posted

    Hi Leslie,

    I'm so sorry about all the discomfort and frustration you are feeling.  I too was so frustrated about 4 years ago when I first joined.  And although I haven't posted much lately, I like to stay connected in case there is someone I can help, the same way I was helped when I joined this group. It was here that I first heard that there was a chance I could improve by just changing what I ate.  I don't know much about the medication route either -- other than there can be bad side effects,  it is necessary for treating Hashimotos, and that I didn't want to rely on medications.  I have opted to address my Sjogrens symptoms by making the necessary changes in my environment(eliminating chemicals as much as possible), balancing my sleep, exercise (not too much not too little), trying to control my stress, altering my diet, and trying to meditate regularly (for a few minutes at least).  Probably the biggest change for me was in the form of my diet.  Someone on this site sparked the idea that it was possible to heal through changes in my diet and lifestyle.  That's all it took for me and I was off to find what I could about it on the internet.  What I can tell you is that even just eliminating the 5 groups of foods that affect most people -- for 3 week, made a noticeable difference.  I did this to try to figure out which food groups were affecting me.  It's been quite a journey, and not easy, but my symptoms, although not completely gone, are infinitely better.  Once again I have energy and I feel good, no pain, minimal dry eyes (mainly during the night and not always), and dry mouth (again at night) -- not sure why this is the case.  My cankers -- gone, RA -- gone, heartburn -- gone, general aches and pains when I used to feel when I got out of bed -- gone, fatigue -- gone.  I just cannot say enough good things about the natural foods that we have at our disposal.  It does take discipline (and I am a weak person), and it can all be done by yourself if you can put the time into it.  For those who have more income, they can solicit the help of a naturopath to help guide them.  But honestly, I started with just a good book that I found, and have since then bought about 4-5 others that have related topics (different authors) just so I could learn how to help myself.  I so wish I had an easier solution.  But even though it's not easy, I feel so much better now.  And I want others to know this.  Besides, no 2 journeys will be the same, but most of us can benefit from eating healthier and living a healthy lifestyle.  I genuinely hope something I said will help and that it's not all old news.  Best of luck!

    • Posted

      What was the diet?

      The name of the book?

      My eating habits could change and having the extra information would help. 

      Thank you for sharing that. 

    • Posted

      If you send me a private message, I can share it with you.  I believe we are not allowed to share book titles in this forum.  By the way, yes Leslie, it is important to take medication for Thyroid damage.
    • Posted

      I would love to know which book you were using and any diet tips or reintroducing foods back in.

      It sounds like the best way to go.

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    • Posted

      Leslie, to send Morelia (or anyone else) a private message via this site, just click on the little envelope icon next to her name. No one needs to use their own email address.
  • Posted

    Leslie. I would definitely take one thing at a time. First of all you need medication for your thyroid problems. Hypothyroiditis! I had that problem a few years back and I could barely get from A to B. I also slept during the day and was always tired. Thank goodness my doc sent me for blood tests and since taking the medication I'm really great now. The medication has to be taken for life. Once you feel more energetic you can face all your other problems. I have SS over 20 years and manage my eyes with drops. My mouth is terribly dry too which is my worst symptom. All my food has to be very bland and my medication liquid form. I really wish you good luck and see to your thyroid ASAP. Kind regards. Irene

    • Posted

      I have been on medication for my Hashimoto's since diagnosed in 2012, as well as med for hypertension.

  • Posted

    Hi Leslie:

    My results came back negative as well, but I KNEW I had Sjogren’s....so I asked for a lip biopsy from my ENT and it was positive. 

    A rheumatologist told me you actually don’t want your lab tests to come back “positive,” because it would mean it’s more severe. 

    You can ask for a lip biopsy and that will, perhaps, give you answers. 

    I hope this helps. 

    Oly.  

  • Posted

    Update:

    I went to the dr today for my follow up lab test. Even though my antibodies were neg for Sjogrens. (I still believe I have it).

    My TSH was high at 6.7. So that has pribably been a contrubuting factor to some of my symptoms. It also showed i had an autoimmunity connective tissue inflammation like i.e. sjogrens or lupus. I was neg for RA too. Along with increasing my Levrothyroxin. The dr prescribed Paquinil but when I went to pick up my script it was $164 for 30 days. Sadly, I could not afford iy so ad to out it back. Now what? He wanted to see me back in a mlm onth to see if there were improvements. I had H flags on cholesteral. A1C, and high red blood cell count. (Not sure what that means since I previously had the same elevation on earlier labs) sigh! I like the idea of treating the gut by changing my diet.

    • Posted

      I tested positive for ANA antibodies as well. Labs came through on that.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.