06-09-2007, 11:19 PM
My doctor has suggested the diagnosis of Lupus but of course its going to be another month or so before I can see our Rhematolgist. I am hoping someone can help me figure out what is going on so I don't have to flip out for the next 4-6 weeks. First off, I am totally ok with a Lupus diagnosis. What I am not ok with is waiting months to find out. I am a control freak and if I know I have it I can do things to help myself, its the not knowing that bothers me.
So here is what I have had done and had issues with... itching palms and ankles for 5 months, with tingling at times. ANA postivie, speckled, 1:40, HCT low at 36.9, GFR 94.9 low for me at 31 years old, butterfly rash and photosensitive, severe tireness and stiffness after any activity. I know the ANA isn't very low so I know if I do have lupus it is very early. I have been anemic most of my life eventhough my iron intake is high. I went in to my doctor orignally because my palms itched like crazy, no redness or rash but it felt like I had poison oak. The ichiness comes and goes but usually comes when I put a lot of pressure on my hands like when I am pushing a shopping cart or smack something. Now I still have the ichiness but i get tingling from time to time, it kind of feels like it does when your arm falls asleep. I also have small sores in my mouth that bug me but don't hurt much. My arthritic panel came back just fine.
Anyways, I know its early but if I can do anything to help myself today I will do it. I am 30 and the mom of two sweet boys so whatever helps is huge for me. I am staying out of the sun and wearing sunblock every day to make sure my sun exposure is kept to a minimum.
06-18-2007, 08:10 AM
One of the most frustrating things for most of us has been the diagnostic process. It can take from months to a year to get a final diagnosis. The problem is that there is no single set of symptoms that are uniformly specific to lupus. Every person's Lupus affects them differently, symptoms appear at different times, they come and go and they can be and in different severities. Also, there are no laboratory tests yet available that can prove conclusively that a person has or does not have lupus. So, there are criteria, that doctors use, to make a diagnosis!
Since symptoms may present themselves slowly and may evolve over months or years, it is important for your doctor to follow you to see what happens. That is frustrating, but it is the sad truth! It can often it can take years for the diagnosis to be made.
I know that this can be a very difficult time, especially when you want some relief from numerous symptoms you may be suffering from. But, only by a comprehensive examination can the probability of lupus be assessed and even then, it is sometimes very difficult to be sure.
Doctors will evaluate your symptoms. Here is an article that outlines that process:
"The first principle in making a diagnosis of SLE is that the individual has clinical evidence of a multi-system disease (i.e. has shown abnormalities in several different organ systems). The following are typical manifestations (symptoms) which might lead to suspicion of SLE.
Skin: butterfly rash; ulcers in the roof of the mouth; hair loss.
Joints: pain; redness and swelling.
Kidney: abnormal urinalysis suggesting kidney disease.
Lining membranes: pleurisy; pericarditis and/or peritonitis (taken together this type of inflammation is known as polyserositis).
Blood: hemolytic anemia (the red cells are destroyed by autoantibodies);
leukopenia (low white blood cell count);
thrombocytopenia (low platelets).
Lungs: infiltrates that may be transient.
Nervous system: convulsions (seizures); psychosis; nerve abnormalities that cause strange sensations or alter muscular ability.
Evaluation of immune status
The second diagnostic principle is to examine the status of the immune system in individuals having a suspicious clinical history. In general, physicians now look for evidence of autoantibodies.At this time some commonly used tests of immune status in the diagnosis of SLE are:
The anti-nuclear antibody test (ANA): a test to determine if autoantibodies to cell nuclei are present in the blood.
The anti-DNA antibody test: to determine if the patient has antibodies to the genetic material in the cell.
The anti-Sm antibody test: to determine if there are antibodies to this substance, a nuclear protein.
A variety of tests for the presence of immune complexes in the blood.
Tests to examine the total level of serum complement - a group of proteins involved in the inflammation which can occur in immune reactions - and tests to assess the specific level of C3 and C4, two proteins of this group.
LE cell prep: An examination of the blood looking for a certain kind of cell which has ingested the swollen antibody-coated nucleus of another cell.
A positive ANA may occur sometime during the course of the illness in about 90 percent of patients with SLE, but it also occurs in a variety of other illnesses and in as much as 5 percent of the normal population. It is a very sensitive test and is now more frequently performed than the LEprep.
Sometimes examination of a tissue sample can be helpful in making the diagnosis. A kidney biopsy, for example, can show certain changes characteristic of SLE if the kidney disease is severe. Even in early kidney involvement, examination of biopsy tissue can show deposits of antibodies and immune complexes in the kidney's filtration unit.
A skin biopsy can be helpful in identifying deposits of antibodies and complement proteins found at the junction of the outer skin layer, called the epidermis, and the underlying part of the skin, the dermis. A "positive band test" is significant only when the tissue sample is taken from an area which is not involved by the rash. The results, like those of a kidney biopsy, should be interpreted in combination with the clinical history, as well as all the other tests performed.
Also, please read the sticky in this forum that discusses the criteria used for diagnosing Lupus.
It is a lengthy, arduous and frustrating process - but you must let the process do its work before coming to any conclusions yourself!
I wish you the very best
Peace and Blessings