Could I have Lupus?
Hello. I am new to this forum. I am sending this in regards to my husband. We are not sure if he has Lupus or not. He gets red round circular spots that appear on his cheek and occasionally on the back of his head. He also has joint pain and muscle weakness. He sometimes has a hard time focusing on a task and does seem forgetful at times. The first dermatologist he saw did a biopsy, of the red round circular spot on his cheek, and the biopsy came back suggestive of Lupus. It has never been confirmed. It has gradually gotten worse. My husband has been activated for a year tour at Fort Knox, KY. He is U.S. Army Reserves. He started having some problems and the military sent him to a dermatologist in Louisville, KY. The dermatologist in Louisville, thinks it is Dermatomyositis. My husband and I are both confused. He has or fits the symptoms of both diseases. Can you give any suggestions or advise on what we should do or try next? Do you know of any good Doctor's in the Louisville, KY area that specializes in these two diseases? We live in Western KY. This is so hard for my husband, he is a very active 35 year old man. When he is not deployed, he is a Detective at our local police department. So between the military and law enforcement he stays very active. Which ever disease this is, is really getting to him. There are days he feels like he has the flu. We would just like some answers or help in getting him diagnosed properly. I am doing all I can to help but with us being apart right now it is very difficult. I am supporting him and trying to get answers. Please help this very concerned wife!!! Thank you so much. By the way my name is Karen.
Has he been referred to a rheumatologist? I would start there to have more tests run. Sometimes it's very hard to diagnose because the symptoms and even lab tests can change. Good luck in your quest to help your husband.
As Catlady said, diagnosing Lupus can be very difficult and sometimes a quite lengthy process. Here is some information just to help you understand the process:
Physicians have to gather information from a variety of sources: past medical history, lab tests and current symptoms. They use a list of 11 criteria to help diagnose SLE. A person needs to satisfy at least 4 out of the 11 criteria before the diagnosis can be pinpointed;
Achy or swollen joints
Persistent fever over 100 degrees
Prolonged, extreme fatigue
Skin rashes, including a butterfly shaped rash across the cheeks and nose
Pain in the chest on deep breathing
Excessive protein in the urine
Sensitivity to sun or ultraviolet light
Abnormal blood clotting problems
Fingers turning white and/or blue in the cold
Mouth or nose ulcers lasting longer than two weeks
The list of 11 criteria is not to be confused with lists of common symptoms of systemic lupus, such as: fatigue, fever, weight loss, hair loss, nausea, Raynaud's phenomenon. These symptoms, could be due to numerous illnesses or conditions, and, therefore, are too vague to be included as diagnostic criteria.
If a person has many of the symptoms of systemic lupus, the physician may suspect lupus is developing, and evaluate the patient to see if any criteria are met. If fewer than 4 criteria are satisfied, there is insufficient evidence to diagnose systemic lupus. A rheumatologist or a clinical immunologist may be consulted if you are looking for a specialist who has the expertise to diagnose and treat lupus.
Some criteria, such as a biopsy diagnosis of kidney lupus, can carry more weight.
Of the 11 criteria, 7 relate to symptoms, and 4 have to do with lab tests. The ANA test is used as a screening test for systemic lupus. We know that 95 % of people with SLE have a positive ANA. Therefore, if a person has many symptoms of systemic lupus and their ANA test is negative, that's generally regarded as pretty good evidence against lupus being the explanation for the symptoms they are having.
If on the other hand, the ANA comes back positive, that IS NOT proof of lupus. The positive ANA is only an indicator; it is not diagnostic. A positive ANA can be found in a number of illnesses and conditions including:
Sjogren's (show-grens) syndrome
Infectious diseases such as:
Subacute bacterial endocarditis (SBE)
Autoimmune diseases including:
Autoimmune thyroid disease
Autoimmune liver disease
Certain medications can also cause a positive ANA. About 20% of the general population when tested will have a positive ANA and not have any of the above mentioned illnesses. The ANA is only a test and like a high cholesterol value, a positive ANA doesn't necessarily equate having a disease.
So, a positive ANA, by itself, is not diagnostic of any one particular disease and may be present in people who have no illness. Although it is often referred to as "a lupus test," it is not like a pregnancy test where a positive result can mean only one thing. The ANA is only an indicator, which points in several possible directions. A positive ANA satisfies only one criterion. A person would need to satisfy at least 3 additional criteria.
Reference: see brochure, Laboratory Tests Used in the Diagnosis of Lupus.
I hope that this has been helpful. If you accompany your husband to his doctor's appointments, do not be afraid to ask questions (make a list beforehand) and arm yourself with information and knowledge.
I wish the best for both of you
Peace and Blessings