View Full Version : Why do all of my doctors have different oppinions?
11-11-2008, 05:04 PM
So my question is this...the gasrtro intestional doc says that, becuase I dont have a lupus rash on my face, i cannot have Lupus.
The family practitioner that specializes in autoimmune stuff says that my patchy arms and autoimmune markers prove I have Lupus.
My rheumatologist doesnt know becuase I am NOT positive for the anti body that is very common in Lupus sufferes (i think it is RPN but not sure).
I am so confused!
What do you all think? How can I know for sure? Do you all have the lupus facial rash, and that antibody?
Welcome. Your situation is not uncommon. Your G.I. Dr. needs to crack open a medical reference book and learn a few things. We hear this all the time. If you don't have the telltale malar or "butterfly rash" on your face, you cannot have Lupus. Well, I've been living with Lupus for five years now, and I have never once had a rash on my face. Never once. I get it on my arms, legs and hands mostly. Although around 90-95% of people diagnosed with Lupus have a positive ANA test, there are a small percentage who do not, but are still diagnosed.
If you look in the "sticky" areas at the top of the various forums here, you'll see a section about the diagnostic criteria for Lupus. I'd recommend you learn as much as you can about the disease. There is an unfortunate lack of knowledge in the medical community regarding Lupus. It is a difficult disease to diagnose as well. The best thing you can do is become an advocate for yourself. Many of us only started making progress towards a diagnosis after we became pro-active and confronted some of our Dr's and Rheumotologists. Some people are still in limbo though, waiting for an answer.
Anyway, I wanted to say welcome, and make yourself at home. There are some folks here with many years of experience living with Lupus. And this is a great place not only for knowledge, but also support. It can be a lonely disease. I find that the only people who can truly understand, are others with the disease. Of course, you'll find some good laughs here as well. I'm glad you joined us!
11-11-2008, 05:31 PM
I think you need to find a different Rheumatologist quickly. I am serious. Not all of the folks with Lupus have the Malar Rash. Not everyone with Lupus is RNP positive either. There are some folks in here that have never had the Malar Rash. One that I can think of right away is Rob. There are some folks about 5% that have Lupus that are what they call Sero-negative. This means that it does not show up in the blood in the form of a positive ANA test etc. The Lupus Foundation has listed 11 criteria and you have to meet at least 4 of them to be considered for a diagnosis. I myself do have the malar rash and I do have the pos ANA, pos SSA and SSB and pos RNP and I can not remember the rest of them right off of the top of my head, but still like I said there is such a thing as Sero-negative Lupus. I just think that you need to see a different Rheumatologist. I am sure there will be others that come in here that will have more information for you.
11-11-2008, 05:45 PM
Opinions are different than a diagnose... and all doctors have one whether they special in the disease or not. G-r-r-r-r.
There is only one guideline for a hard diagnose and that is the American College of Rheumatology, ACR Criteria for diagnosing. Four of the eleven have to met. Not all at once, accumulative...they are as follows.
Malar Rash ...Rash over the cheeks
Discoid Rash....Red raised patches
Photosensitivity ....Reaction to sunlight, resulting in the development of or increase in skin rash
Oral Ulcers ....Ulcers in the nose or mouth, usually painless
Arthritis ....Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)
Serositis.....Pleuritis or pericarditis (inflammation of the lining of the lung or heart)
Renal Disorder....Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)
Neurologic Disorder....Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects
Hematologic Disorder....Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.
Antinuclear Antibody....Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.
Immunologic Disorder....Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).
Diagnosing lupus can be difficult. It may take months or even years for doctors to piece together the symptoms to diagnose this complex disease accurately. Making a correct diagnosis of lupus requires knowledge and awareness on the part of the doctor and good communication on the part of the patient. Giving the doctor a complete, accurate medical history (for example, what health problems you have had and for how long) is critical to the process of diagnosis. This information, along with a physical examination and the results of laboratory tests, helps the doctor consider other diseases that may mimic lupus, or determine if the patient truly has the disease. Reaching a diagnosis may take time as new symptoms appear.
No single test can determine whether a person has lupus, but several laboratory tests may help the doctor to make a diagnosis. The most useful tests identify certain autoantibodies often present in the blood of people with lupus. For example, the antinuclear antibody (ANA) test is commonly used to look for autoantibodies that react against components of the nucleus, or "command center," of the body's cells. Most people with lupus test positive for ANA; however, there are a number of other causes of a positive ANA besides lupus, including infections, other autoimmune diseases, and occasionally as a finding in healthy people.
The ANA test simply provides another clue for the doctor to consider in making a diagnosis. In addition, there are blood tests for individual types of autoantibodies that are more specific to people with lupus, although not all people with lupus test positive for these and not all people with these antibodies have lupus. These antibodies include anti-DNA, anti-Sm, anti-RNP, anti-Ro (SSA), and anti-La (SSB). The doctor may use these antibody tests to help make a diagnosis of lupus.
Some tests are used less frequently but may be helpful if the cause of a person's symptoms remains unclear. The doctor may order a biopsy of the skin or kidneys if those body systems are affected. Some doctors may order a test for anticardiolipin (or antiphospholipid) antibody. The presence of this antibody may indicate increased risk for blood clotting and increased risk for miscarriage in pregnant women with lupus. Again, all these tests merely serve as tools to give the doctor clues and information in making a diagnosis. The doctor will look at the entire picture-medical history, symptoms, and test results-to determine if a person has lupus.
Other laboratory tests are used to monitor the progress of the disease once it has been diagnosed. A complete blood count, urinalysis, blood chemistries, and the erythrocyte sedimentation rate (ESR) test can provide valuable information. Another common test measures the blood level of a group of substances called complement. People with lupus often have increased ESRs and low complement levels, especially during flares of the disease. X rays and other imaging tests can help doctors see the organs affected by SLE.
Diagnostic Tools for Lupus
• Medical history
• Complete physical examination
• Laboratory tests:
o Complete blood count
o Erythrocyte sedimentation rate (ESR)
o Blood chemistries
o Complement levels
o Antinuclear antibody test (ANA)
o Other autoantibody tests (anti-DNA, anti-Sm, anti-RNP, anti-Ro [SSA], anti-La [SSB])
o Anticardiolipin antibody test
• Skin biopsy
• Kidney biopsy
Thank you for posting that info Oluwa. You rule! :D
11-11-2008, 09:04 PM
Yeah...Oluwa rocks! And ROB ain't so bad himself!!!
11-11-2008, 10:26 PM
You guys all rock! thanks...so if I am not mistaken, this is how it goes, and I am tempted to bring this list with me on my apt on monday!
I have had or do have:
*started with the discoid rash many years ago
*photosensitivity super bad
HHHmmm that coupled with a few other things makes me think twice. I will mention these things to the rheumy...actually I am seeing the nurse practitioner...I hope that she will be able to help me just the same as the actual doctor would!
11-12-2008, 06:54 AM
I think you should take a list of everything you have and also list everything you can think of that has happened through your whole life and let the Nurse Practitioner see it and I am sure that she will get it to the doctors attention big time. Good luck with your appointment. Let us all know how it goes ok.
11-12-2008, 07:21 AM
We Have Lupus Rocks on! Woohooo.....
Yes, bring that list in. If it was me, I wouldn't use it to prove to them I have Lupus, but to ask him to explain each thing I posted on the list, to help you understand how your tests, your symptoms fit in or not.
Also bring a list of questions you may have and a pen to check them off as you go...
And if able bring another person, to help you stay focused on what is important on your list of questions..and to help with remembering what was said.
Times, I know I do get off track and too, I forget things that was said. It can be overwhelming, a lot of information to digest in one appointment. If all questions and concerns were not addressed in the time allotted. Turn around and make the next available appointment. We don't have to wait to see them every two months...
Make your lists, complete them by Friday and enjoy the weekend that is to come...
11-12-2008, 10:06 AM
Yes, take that list. Write down questions you want to ask and list of other symptoms as well. Hope the NP is a great help. Mine was at first, now not so sure. Also haven't seen real doc in almost a year. All apps are with her now. Ask to see the doc if not happy with NP. Hopefully app goes well monday for you.