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Lupus/Connective Tissue Disease

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Question
Hi,I have a question about my diagnoses I got recently from a Rheumatalogist. Four years ago my regular MD sent me to a Rheumatologist when complaining of joint pain and a negative Limes test and a positive ANA test (1:320). The Rheumy said that he did not think it was anything more than a carry over of my previous autoimmune disease (Graves) Last year I was also diagnosed with Celiac, and recently went back to the Rheumatologist with painful joints in my hands and fingers, had a joint scan and more blood work. Now my ANA is 1:640 and I also had an elevated dsDNA appear. He now gave me a diagnoises of connective tissue disease and a prescription for Hydroxychloroquine. Only been on that a week and have now developed more joint pain hips, knees and one ankle. When researching connective tissue disease it comes up to be the same as Lupus. Are they the same thing? Thank you in advance for any response.

Answer
Hello!

Yes I have noticed lately that more and more people are getting diagnosed with MCTD (Multiple connective tissue disease) than lupus. I don't know why this is a more preferred diagnosis, but it definitely seems to be the trend with doctors - to avoid saying "lupus."

This may or may not be of some help:
http://www.medicinenet.com/mixed_connective_tissue_disease/page2.htm#Whatis

Seems like lupus is a sub-category of Mixed Connective tissue disease. It is very common for someone with one autoimmune disease to have 2 or 3 or even more other autoimmune diseases. For example, Celiac is autoimmune. So is Graves. The somewhat helpful news is that treatments for lupus and MCTD are pretty much the same.

I will ask you this: are you staying on a gluten-free diet? And are you aware that some people with Celiac also have to eliminate dairy in order to stop the Celiac activity? As far as I know I don't have Celiac, but I haven't been tested for it. However I do have allergies to dairy and gluten and wheat, so I eat a gluten-free, dairy-free diet and that allows me to stay off all lupus medications. I've been on 9 drugs plus chemo and transfusions when it was it its worst, with kidney failure, congestive heart failure, and a stroke. And now I tap dance, got married, perform regularly on stage, and am not on any immune suppressants. (I do still take a blood pressure drug). So, I was able to get the autoimmune stuff under control with just diet. It might work for you as well.

My best wishes-
Carla

Carla Ulbrich

The Singing Patient: Author, Speaker, Funny Medical Songs

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Lupus

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Carla Ulbrich

Expertise

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.

Experience

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.

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

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

Education/Credentials
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)

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

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