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Lupus/Undiagnosed childhood lupus?

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For several years I have been having lots of pain and medical issues. 98% of my colon was removed at age 36 due to 100's and 100's of precancerous polyps formed within 10 months. One test showed 3 noncancerous and 10 months later they couldnt be counted. Before and after that I have been having corrective surgeries on my feet. 5 on the left and 6 on the right.
I have always had health problems even as a child. Many of my pains and problems go no doctors due to no insurance as a child. In the last 10 years I have been getting sicker and sicker.
The last 3 years I have noticed flare ups either due to sun exposure and/or surgeries.
First was the intestine then my gallbladder was being attacked. I had a 15 mm gallstone but pathology said the inside functioned normally but the outside of the gallbladder was attacked multiple times. Then at the same time the er said I had pancreatitis. Since then I have been diagnosed with kidney disease stage 1(last year). I was losing 1000 mg of protein daily. I think that has gotten worse now.
My right flank always burns its hard to pee. sometimes i have to press on my right back to go pee. and at night very little comes out.
my platelets have always been 150k or more then last 3 years down to 115k
last year it was disc shaped rashes on my belly and face
this year i sometimes show the mylar but have this weird attack on skin starting with burning inflamed then itchy so bad i itch and break open sores.
my first ANA last year was negative.
my vitamin D is alway extemely low 19 was in Sept.
what can i do push my reumi to test again or do the dna test
Help during a flare up there are days every joint and organ from neck to feet are inflamed. I can only cry to my drs now.

Answer
Hello -

I'm so sorry for your frustration and all you've been through.
I know how it feels to be suffering and not have an answer as to what is going on.
I have lupus and it took me 2 years to get diagnosed. Autoimmune stuff is not easy to figure out, as it changes so much.

It certainly sounds like you have something autoimmune, with the various organs being inflamed and attacked. Please consider getting tested for Celiac disease. For a number of people, Celiac disease is underlying their autoimmune disease. And for me, simply changing my diet (no wheat or dairy, or nutrasweet) eliminated my need for immune-suppressing medication.

Sometimes (in fact, often with autoimmune activity), there is more than one thing going on. For example (I'm not diagnosing, just giving an example), you could have a urinary tract or bladder issue AND sarcoidosis. Or kidney disease AND scleroderma. Or a prostate issue AND lupus. My point is not that I think you have any of those things, but that I suspect you may have more than one thing going on. It would be nice to have one big umbrella explanation like lupus for all of it, but perhaps be open to the idea that there may be 2 or more things going on.

I will suggest that you take this list you just typed and bring it to whomever you see next, so that you remember to mention everything. They need the whole picture in order to arrive at a proper diagnosis.

It sounds like you have a lot of inflammation, and I'm wondering why (or if) your doctors haven't prescribed an anti-inflammatory of some kind, such as prednisone or even an NSAID (non-steroidal anti inflammatory drug)? I don't like being on prednisone, but it does put out the fire.

Lastly, you can fix your vitamin D levels yourself. Get some D3 from a reputable source (I use mercola.com). Here is a link to a bunch of very interesting articles on healing autoimmune problems naturally: http://drhyman.com/blog/conditions-category/autoimmune-disorders/

I wish you all the best. A fellow traveler seeking optimal health-
Carla


Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

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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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