I am new to this forum and grateful to have found it. I am in need of your advice/suggestions. I'll explain why. Over 20 years ago (I'm an active 65 year old female)I was tested for all the AI disorders and all were negative. My symptoms at the time were varied and some difficult to explain. I had off and on fever, legs that felt like walking in concrete, off and on dizziness, plantar fasciitis, what was similar to pleurisy that worsened with change of position, etc. I also developed GERD. I was treated with steroids and improved. A few years ago I experienced jaw pain, burning sensation in my thighs, numbness and tingling in my arms, burning eyes, pain in toes, knees, etc. Recently I have had weird sinking feeling where I feel life is draining out of me. In July of 2015 an ultra sound showed a normal size thyroid with nodules. Due to family history, I had a TT in Spetember 2015. The surgeon found only traces of the thyroid gland and the nodules. He nor I have any idea what happened to my thyroid gland in a matter of months. He said this has occured once in his practice and it was cancer. My labs were fine. Since then I have experienced hoarseness, extreme dry mouth at night, dry eyes sensitivity to cold and bright light. The ANA test has come back negative. Other labs show inflammation (his-CRP, LpPLA, MPO, Albunin). All other labs normal. My GP mentioned Sjogrens, but that was all. What do you think? I'm frustrated and not sure what to do next. I'm using Bioten and Act-Dry Mouth and Genteal for eyes. Does the ANA include the anti-SSA and SSB? Help! Thanks!!
hello and welcome.
The ANA is separate from the SSA and SSB. Did you get a copy of your labs
to see if the dr. ran those tests? ( my family dr. did not run these but my rheumy did)
If the dr. thought it may be sjogrens, did he mention referring you to a rheumatologist?
Another test for sjogrens that some on this forum had was a lip biopsy.....for checking
your salivary glands.
Most rhuemys will dx and treat you for sjogrens based on symptoms from what I've
read on this forum and in sjogren literature/books.
In my case I had symptoms for many years and no one connected the dots
till I had much pain in my right hip. Family dr. ran labs and my ANA, ESR, RF
were very high.....he then referred me to rheumy who ran SSA and SSB and many others
which came back positive for sjogrens and RA.
shelly
Hi dBrock,
I can't answer any of your queries, but can suggest two products for your oral dryness: Xylimelts (can get at Amazon) and Biotene ORAL GEL. (Also available at Amazon) They (to me) are the only OTC products which help with SjS symptoms whether you are positive or negative. In addition, they are products for oral or facial cancer patients who have temporary damage to various oral parts during chemo and/or radiation. I recently sent two care packages to a friend's son who had both for neck lymphoma. Though they now fit with a leaded face mask, & his esophagus was "burned" (damaged) by radiation anyway. He ended up with a feeding tube in his stomach as he was unable to swallow. Of course, we know his parotids (at least) were temporarily damaged as he was producing minimal saliva. He is 6 months post treatment and the feeding tube was removed in November. He is still having a problem swallowing some foods. I think he's scared to eat certain foods. But anyway, those products above he still keeps at hand.
Good luck on finding out a diagnosis. In the meantime, I heartily endorse the aforementioned products.
c3
Dbrock, Have you had your TPO or thyroperoxidase level checked? This shows the level of antibodies in your blood that are trying to kill off your thyroid gland. This antibody is specific for your thyroid. I don't know off
hand of other blood work that can be involved .
The ANA is not always positive nor are other blood levels always positive for the specific diseases. However, the Hashimotos is the autoimmune disease that affects the thyroid and it is very common along with Sjogrens and other autoimmune diseases. The doctor would be wise to check this out. This is interesting but terribly confusing and I hope that you can find a doc who will figure it out. I would suggest finding an immunologist as they are very good at the autoimmune, immune and allergies. All these type diseases can be involved with each other at times. Good luck. Irish
Hello Dbrock, please tell me me what is a TT you had in September 2015, what does TT mean ??? Thank you, Nina