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Lupus Disease; How to Get Correct Diagnosis

Updated on June 12, 2015
brakel2 profile image

A medical background and interest in research created Audrey Selig's interest in writing about medical issues.

Path to Lupus Disease Diagnosis

Lupus Disease is an autoimmune disease that affects various parts of the body, while an autoimmune disease is a process in which the body's immune system attacks its own tissues. Lupus and certain other autoimmune diseases face difficulty in diagnosis, partly due to the similarity to other diseases. Patients become very confused and frightened when they have numerous symptoms and no one can give them an answer to relieve the suffering. Often, they doctor shop, hoping to find one physician who can help them.The information presented here may assist patients and also help friends and family become more supportive and understanding of Lupus Disease.. These are some of the problems in getting a correct diagnosis.

Lupus Disease Patient with Hope

She hopes her lupus disease is in remission.
She hopes her lupus disease is in remission. | Source
  • Recognize the Problems.

One issue is the reduced time that physicians see patients, with many visits lasting only 10-15 minutes. The physician may never be aware of any Lupus symptoms,while the aware physician may refer the patient to the wrong specialist or not refer at all. Some patients with symptoms may never get to a physician due to lack of insurance. Others may not have enough symptoms to establish a diagnosis. In addition, Dr. Lisa Sanders ,Yale Medical School,. states medical schools often teach physicians to look first for the common conditions as quoted in the July-August 2011 AARP magazine article "When Your Doctor Doesn't Know." .Following are true patient stories, which typify the barriers.

  • Get the Right Doctor

One physician, even though the patient had borderline Lupus from tests at a teaching hospital, stated that she would not follow through at this point, She stated there is not much treatment for autoimmune diseases, anyway. In addition, she indicated that the test result sounded more like a different autoimmune disease. This physician is probably in the minority, and basically is a good physician in other areas, The patient went to a Rheumatologist who found her negative for autoimmune disease. Another doctor discovered Lupus Disease in a patient just before her death. In another case, a physician diagnosed his patient with Lupus and treated her for years, finally discovering that she had some symptoms but not the disease. In reality, this is a success story.These scenarios are not unusual, but very stressful for patients who want answers in order to handle their diseases and complaints, . The patiient must find a good doctor, preferably a Rheumatologist. They can call their local Lupus Association for additional information, and take other steps as follows.


Organ Involvement in Lupus Disease

Lupus Disease sometimes involves the heart
Lupus Disease sometimes involves the heart | Source
Doctor examines xrays for Lupus involvement.
Doctor examines xrays for Lupus involvement. | Source
  • Keep A Journal with Symptoms

Symptoms of lupus disease are as follows according to the Lupus Research Association.

Cardiopulmonary involvement

Rash across nose

Red patches on skin

Skin rash from sunlight

Mouth or nose ulcers

Arthritis

Neurologic disorder

Kidney disorder

Blood disorder

Immunologic disorder

ANA antibodies - a special ANA test

Established Criteria

Four or more of these symptoms are evidence of Lupus Disease. as established by the American College of Rheumatology . Find further information about the symptoms and treatment at Lupus Research Institute.

The National Institute of Health set up in 2008 an undiagnosed diseases project where physicians may refer patients with such diseases that are serious and not diagnosed. The criteria are: thorough workups and tests before acceptance. The project covers most diseases, including autoimmune diseases. Such attenpts help the patients become successful in their quest.

Steps to Success for Patients - Conclusion

Patients who have Lupus symptoms should never give up. If your doctor tells you the symptoms are inconclusive, you have alternatives. You may certainly ask for a referral to a Rheumatologist, and not give up until you have answers. Get an opinion from another Rheumatologist. Get your medical records, and put them on a computer flash drive. No matter where you go, you will always have your records. Join a Lupus forum on the computer or go to a support group. Keep fit through exercise, take pain medicine as needed, and eat nutritious foods. Be sure to have supportive friends and family around you, and try to keep an upbeat attitude. You may never be diagnosed with Lupus Disease , and, if you are, this preparation may give you the odds to fight it and beat it.


Note: The information for this article is from the resources listed below and from the author who has medical social work background. Patients should see their physicians if they have any questions.


Lupus Association on Lupus Disease

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    • FlourishAnyway profile image

      FlourishAnyway 

      5 years ago from USA

      Good, helpful hub with multiple resources for those who have lupus or are undergoing testing for it. (I live with MS and wrote a similar one on that disease.) I'm fascinated how autoimmune diseases run in families in such peculiar ways, although not always directly. I have relatives with lupus, RA, psoriasis, diabetes, and I have MS. All are autoimmune disorders. Makes me wonder.

    • brakel2 profile imageAUTHOR

      Audrey Selig 

      5 years ago from Oklahoma City, Oklahoma

      Hi Jaye.

      I am sorry to be answering this so late, as I was unaware of it. Thank you so much for the responsive positive comment. It is so discouraging to not have a good doctor. You feel like you are in limbo. I know Pamela drives a long way to her trusting physician. Hope you find one that is knowledgable and that you can trust. Thanks for stopping by. I love to hear from you. It makes my day.

    • JayeWisdom profile image

      Jaye Denman 

      5 years ago from Deep South, USA

      This is a very good article. Because I have a few symptoms that worried my hematologist, she had me tested for Lupus. Fortunately, I tested negative, for which I'm very thankful. What concerns me is that my rheumatologist was aware of those same symptoms, but never bothered to mention Lupus, much less test me. Pamela mentioned the need to find a "good" rheumatologist, and that's what I'm trying to do at the present. They are few and far between in my area. (I have another condition that requires monitoring by a rheumatologist.)

      Voted Up++

    • brakel2 profile imageAUTHOR

      Audrey Selig 

      7 years ago from Oklahoma City, Oklahoma

      Hi Pamela - Thanks for further info. The man in the AARP article who was misdiagnosed, had celiac disease. His prior test was negative which is why he went to so many physicians. Finally a physician at Massachusetts General sat with him for one hour after he got sick when he went off his liquid diet. He went over his diet thoroughly and from that conversation, he had further testing and finally knew the answer. See the importance of time spent by physician with patient. He had celiac disease and could not eat gluten. That article and info on Lupus and other misdiagnosed diseases inspired me to write this article. Thanks for all comments.

    • Pamela99 profile image

      Pamela Oglesby 

      7 years ago from Sunny Florida

      I looked at the AARP page and the story about the man with the stomach problems was the first article which was obviously a misdiagnoses but I couldn't find any information on what his problem was. I did see where Lupus was listed as a hard to diagnose disease and that I believe is very true. Different patients present with different symptoms. There is a couple of blood tests for lupus that help with the diagnosis but are not specific.

      There are not enough really good rheumatologists in many areas and yes this is a major problem as many family doctors just don't seem to have the knowledge to diagnosis this disease. I actually drive from Jacksonville, FL to Atlanta to see my doctor as I use to live in Atlanta and she is just excellent. Rheumatologist are not particularly well paid, which probably increases the shortage. Reading everything you can about the disease may help you figure out if you have lupus versus fibromyalgia or some other disease. Rheumatoid arthritis does have a specific blood test so you should be able to rule it out. Fatigue and joint pain is typical of several diseases, along with anemia. Fibromyalgia has more muscle pain than joint pain but the fatigue and amount of pain can also be miserable.

    • brakel2 profile imageAUTHOR

      Audrey Selig 

      7 years ago from Oklahoma City, Oklahoma

      Hi Pamela - I am glad you read my article and added your own comments. I know you are a nurse and have a great deal of knowledge and credibility. You might read the article from AARP and give me your opinion if you have time. It seems a little one-sided. Anyway, I believe that your comments are helpful to Lupus patients and families. The new drug may give hope to them. It sounds as though you are a very courageous person who has taken charge of your own health. In Oklahoma City, there is a shortage of physicians and also a shortage of rheumatologists. That makes it difficult for the residents. Thanks for all your remarks and for rating my article. Take care.

    • Pamela99 profile image

      Pamela Oglesby 

      7 years ago from Sunny Florida

      Most good rheumatologist can diagnosis lupus correctly these days, which is not the case for family practitioners. The more symptoms you have on your symptom list the probable you have the disease. As an RN and a person with lupus I have had much experience. It took me a couple of years to get diagnosed, but someone with advance lupus disease, ie involving the kidneys, for instance, would probably get you a diagnosis much more quickly, as a kidney biopsy would give you a definitive diagnosis.

      There is a specific test for rheumatoid arthritis which makes their diagnosis so much easier. Lupus is definitely more difficult to diagnosis. If you are not positive on the ANA blood test you probably don't have lupus as 98% of lupus patients are found to be positive. The other thing is there is a new drug, Benesta, on the market that actually treats the disease of lupus which is the first one in 50 years. Other medications only treat the symptoms. I think you have a lot of great information in your hub but I hope you don't mind me adding my personal experience as people really need to see a good rheumatologist if they suspect they have any auto-immune disease. The Lupus support groups are helpful in suggesting a good doctor most of the time.

      Rated up and useful.

    • brakel2 profile imageAUTHOR

      Audrey Selig 

      7 years ago from Oklahoma City, Oklahoma

      You made my day, as I did not want to come down on doctors, so I really worked to make this hub objective. I have friends who have autoimmune diseases, and I understand the struggle. I wish it was easier to get a correct diagnosis, but I definitely believe in taking charge of your own health. I am glad you enjoyed it. You are one credible person and a good writer.

    • Happyboomernurse profile image

      Gail Sobotkin 

      7 years ago from South Carolina

      Very comprehensive, well documented hub about Lupus disease and its diagnosis with lots of links to further information. Thanks for sharing this important information on Hub Pages as this disease is frequently misdiagnosed and it can be frustrating for patients to have symptoms without knowing the cause or receiving effective treatment.

      Am rating this article up, useful and interesting.

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