Sjogren's or something else? This HAS to be Auto-Immune

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Firefly20
New Member


Date Joined Jul 2015
Total Posts : 12
   Posted 6/1/2016 3:06 PM (GMT -7)   
Hello All,

At this point, I am feeling very frustrated in my medical diagnosis stage. I was diagnosed with Hashimoto's Thyroiditis about 15 years ago, had a partial thyroid removal due to a goiter and then developed Papillary Thyroid Cancer in the remaining thyroid side about 8 years ago and had another surgery.

Approximately 3 years ago I came down with Mono for the 5th time in my life (I was 38 years old) and never fully recovered from that. I started dealing with severe GI issues immediately after and had lost 50 - 60 pounds in one year (I was way too thin). I had an upper GI and colonoscopy and was negative for Crohn's and Celiac. I had gone gluten free to help with digestion and that seemed to temporarily help and remain on the GF diet.

Last year, I started coming down with episodes of Episcleritis along with severe fatigue, severe dry eyes, joint pain and stiffness, headaches, brain fog, etc. I was in OT for two months due to weakness in my hands. My ANA came back high positive 1:1280 Diffuse and my ESR was elevated each time it was done (30 - 50). I was told that RA, Lupus, Lyme, ANCA, SSA/SSB Antibody, CCP Antibody and more were negative. Rheumy blames my ANA on my Hashimoto's, however, I cannot remember ever having a positive ANA previously and my GP said his records are showing that last year was my first positive.

I continue to go through flares, I also have episodes of jaw pain, and constant feeling as of there is a severe dryness in my eyes and nose, however, my sinuses feel like they are draining in ears and throat. Oh, and I am allergic to almost ALL medicines, I get severe heart racing and horrible side effects. They send me to the ER.

I am sure I am forgetting some symptoms, but bottom line is that these flares are overwhelming and I am tired of trying to be my own health advocate. I am not able to work and had to resign from my job last August because these flares just won't settle down :(

Btw, my eye doctor suggested that it may be Lyme or Lupus and my GP thought it could be Lupus, but the specialist said no. Another doctor also talked about Lyme. I seriously do not know what to do anymore!

Any thoughts on this would be GREATLY appreciated!

Post Edited (Firefly20) : 6/1/2016 5:13:50 PM (GMT-6)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7219
   Posted 6/1/2016 7:09 PM (GMT -7)   
I think you need a second opinion from a more Lupus-aware rheumatologist.

To find one, I suggest checking with the Lupus Org at www.lupus.org to find your local chapter of the organization. Then check in with the local chapter to see which local Drs are active on the advisory board -- these are generally the Drs most interested in and most experienced with Lupus in your area.

Lupus, and many other auto-immune diseases, are diagnosed more by symptoms than by blood tests, and it sounds as though you may have fallen in with very old-fashioned and not very helpful rheumy. A good rheumy will be trying to make you feel better, not blaming a positive ANA on something that previously existed and ignoring symptoms.

Let us know how it goes.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Firefly20
New Member


Date Joined Jul 2015
Total Posts : 12
   Posted 6/2/2016 10:35 AM (GMT -7)   
Hi Lynnwood,

Thank you for that information, I will definitely take a look into another opinion. I am getting so frustrated in Rheumy because anyone can order blood work and if it comes back positive, diagnosis. I thought they they would be more advanced in helping me since all of my bloodwork is not positive. I am trying to stay encouraged that I will get the proper treatment, but it is getting very difficult and is now making me depressed.
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