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Lupus/Is the Diagnoses Sjogrens, Lupus or Scleroderma? I Test Positive for All.

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Question
Dear Expert,

Six years ago I felt like I had the flu everyday.  Unexplained fevers, body aches, joint pain and extreme fatigue.  A family doctor ordered an ANA that was high positive.  A rheumatologist diagnosed me with Sjogrens due to high SSA and SSB, dry eyes and mouth.  I have had dizziness, slurred speech and in 2009 I was hospitalized for an acute onset of diverticulitis and an abcessed colon.  I was hospitalized again in 2011 for stomach and colon problems and the biopsy diagnosed lymphocetic or microscopic colitis.  I have had ongoing diarrhea since 2009.  I have been on Plaquinal for the last couple of years and have only experienced slight relief in my joint pain.  Six months ago I began suffering with severe headaches along with scalp rashes and itchy rashes along my elbows,forearms, shoulders, neck and hairline.  My Rheumy thought it was poisen ivy, but I knew otherwise.  Two months later the rash was on my fingers, knuckles and I had inflamed nailbeds.  A biopsy confirmed mixed connective tissue disease.  I took the results back to my Rheumy and she dismissed them.  Meanwhile my headaches are worse and steroid creams seem to help the rashes.  My family doctor knew my baseline and told me that I was declining so he referred me to the Cleveland Clinic.  Meanwhile, I am barely driving and have limited function due to the severe vertigo and intermittant shortness of breath.  The doctor at the Cleveland Clinic told me he was going to assume I had nothing and start from ground zero.  Blood test were as follows;

ANA          Positive High
dsDNA          Positive High
SSB          Positive High
SSA          Positive High
Centromere Ab   Positive High
Chromatin Ab    Low Positive  Flagged High
Alpha 2 Beta
Globulin        Abnormal Low

The Cleveland Clinic Rheumy told me I test positive for Sjogrens' Scleroderma and Lupus.  He told me some doctor's might call it Lupus and he said he was debating on calling it Primary Sjogren's with overlap autoimmune or mixed connective tissue disease.  I am almost 50 and was a picture of health prior to 2007.  Today, I feel like i am fading away both mentally and physically.  I am unable to work and struggle with simple activities of daily life all while trying to care for a family of five.  The Cleveland Clinic Rheumy told me I am fine because there is no organ failure.  Meanwhile he wants me to con
tinue on Plaquinal and he may add Imuran for nerve damage.  I have been dropping items from my right hand, having tremors and frequent head pain.  I was a medical sales rep with high energy and great attention to detail.  Now I mix up words and feel like I have Alzheimers.  This decline in my health has been very isolating and no one understands what battle is taking place in the cells of my body.  I would like to know your thoughts and experience.  Theses diseases are so subjective and it appears that so are doctor's diagnoses.  I want to have some quality to my life and not decline further.  I have worked for thirty years and served my country as a combat medic in the 1980s.  Now I cannot safely drive myself to the grocery store.  I am still very young and have a family to raise. Let me know your thoughts.

 Thank You,

 Confused about Diagnoses

Answer
Dear Lynne,
Thank you for writing. I'm so sorry to hear of the problems you are having both with your health and energy and with being taken seriously by the doctors.

In regards to your question, it's very common to have more than one autoimmune disease. I have 4. Lupus, Sjogren's, Raynaud's, Fibromyalgia. So you could have both Sjogren's and lupus or both Sjogren's and MCTD.

You know this is not normal, not who you are, and nothing at all near what your potential is. I hear that.

Placquenil, in my opinion, is not a strong enough drug to take care of the autoimmune attack you are dealing with. Although I am not a doctor, and should not give out medical advice ot someone I've never met, I would consider asking the doctor if they might consider putting you on a course of prednisone for 6-9 months so you can get this more completely under control.

Meanwhile, it's always good to get to the bottom of why this is happening, and mainstream medicine typically doesn't address this. They just try to avoid death and manage symptoms, but we can aim higher than that.

I was diagnosed with lupus in 1993 (after 2 years of serious symptoms and multiple doctors). I did have kidney problems, so I did get prednisone, and although I hated the side effects, it gave me my energy back and the strength to do the alternative medicine and nutrition to build my health back up. Prednisone saved my life. And then I got off of it by building up my health, before it made me obese or diabetic. It's a powerful drug.

The other most powerful non-prescription antidotes for me have been a gluten-free, dairy-free diet (and also no MSG or nutrasweet/ aspartame- that's most gum, a lot of candy, and diet soda). I also did chi gung to build my energy back up. I now live a very active life, teaching guitar, married, and performing humorous songs and recording CDs. I take tap dance lessons and do country line dancing for fun. I'm living my dream life. And at times, as long as I stick to my diet, my lab tests turn up completely negative for any autoimmune disease.

There is hope beyond what you've been told- you can regain your health. Have a look at this webpage by a progressive MD, Dr. Hyman: http://drhyman.com/blog/2010/04/20/autoimmune-disease-stop-your-body-from-attack

Wishing you all the best, and that you regain your health completely-
Carla


Carla Ulbrich

The Singing Patient: Author, Survivor, Humorous Songwriter and Entertainer

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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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