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Lupus/Sjögren's syndrome


I had an ANA panel done and my sjogren's SSA came back at 5.8 and it said the normal is .9 and my SSB at .4 and the normal is .9. I found out by accident that I was positive with the ANA saying positive for sjogren's and I saw a rheumatologist today. I told him I had very dry eyes and a very dry mouth and that I had GI problems and joint and muscle pain. He looked at my mouth (just looked in it no tests or anything) and told me I did not have dry mouth even though I cannot swallow food without aid of water. I don't know what to do at this point. I asked for a second opinion and I bugged him into more blood tests that he grudgingly ordered. The waiting period in my opinion is the worst. I don't know what to do at this point. Do you have any advice?

Yes, trying to get diagnosed when you have something autoimmune can be a very frustrating process. It sounds like you do have something autoimmune- it's now a matter of getting to exactly what.

It also sounds like the Doc didn't take you seriously, which is disturbing. How can you look at a mouth and tell if it's dry?

I would get a second opinion. You don't need his permission to do that.
And hopefully the labs will be back soon, if they aren't already, and will give you some answers. Good for you for pushing for that! That's what it takes to be an empowered patient. Stand up for yourself, ask questions, and keep looking for answers until you're satisfied. It's not too much to ask.

Labs usually take only 3-7 days to send their results back to the doctor. I was told recently that some labs allow you, the patient, to view your test results online. So, you may want to call the lab and see whether that's an option for you. If not, you are legally allowed copies of your own medical records. So, you can call that doctor's office and ask if they would please fax you a copy of your labs, or make a copy of it and you can go by and pick it up. They are allowed to charge as much as $2 per page, but labs should not be more than 1-3 pages long.

I hope this helps you get your answers soon!

Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer - Carla's book "How Can You NOT Laugh at a Time Like This?"  


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Carla Ulbrich


I can answer questions such as "what is lupus?" (How common is it? Is it contagious? What are the symptoms? etc.). Also, I can answer questions such as "what are the available treatments for lupus?" (both standard and alternative). Really, I'll take almost any question on lupus, though. If I can't answer it, I'll be very surprised, but I'll also go find someone who can.


I've been living with lupus (SLE) since 1992. I've had three severe bouts with it, including symptoms such as kidney failure and stroke (if you can call having a stroke a "symptom"). I have completely regained my health, though I have to be mindful to take care of myself, lest I get sick again. I use both mainstream and alternative medicine, and have tried just about everything under the sun to alleviate symptoms. A lot of it worked.

Lupus Foundation of America Association for Applied and Therapeutic Humor Toastmasters Folk Alliance

How Can You Not Laugh at a Time Like This? (Tell Me Press, pub.) What is Laughter Lupus Sundial Newsletter

BA in music (UNC-Greensboro)

Awards and Honors
Novelty Song of the Year, Just Plain Folk Awards Winner, South Florida Folk Festival Song Competition Lupus Foundation of America Seal of Approval (for book)

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Medicaid Conference Alaska Palliative Care Conference Right at Home Health Care SePHIMA Anritsu Club Med Nursing in Practice

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