Hi, I'm doing some of my own research regarding my health... I'm not sure if it's lupus or not. But I figured I would get the opinions of people who live with it, since you know first-hand what lupus is all about. So here's my story....
Until I was 18 the only things I suffered from were hypoglycemia and a slight case of heart arrhythmia as well as asthma, otherwise I was in great health. I got Mono in 1996 when I was 18, as well as strep throat and a bad bladder infection at the same time. After I got "better" I noticed I wasn't really better. I'd get sick every two weeks or so. I became anemic. The ankle I had sprained when I was 16, hurt even with the shortest of walks.
I'd get these rashes after being out in the sun...but it was only on my arms where my elbow hinges, my armpits, and sometimes my neck... any place that skin touched skin and could sweat. The rashes would last at least a week. Sometimes the rashes would show in the same places if I was stressed out.
In 2000, I was diagnosed with Polycystic Ovarian Syndrome (PCOS) when I was actually going to be tested for Hypothyroid. Two years later I was diagnosed with Hypothyroid. I have a relatively mild case of PCOS, I caught it early enough, but I do have the actual cysts.
I noticed my energy level dropping dramtically...I used to have tons of energy. Now it seems I have to "gear up" for most activities. My joints ache on a regular basis... especially my knees.
It wasn't until I got the rash across my face that I even considered Lupus. I've only gotten it bad once. But there was the hint that it was coming back but it never really got any worse.
My two cousins on my dad's side were both diagnosed with Lupus. My aunt, their mother, has had Rheumetoid Arthritis for years, but she was just recently diagnosed with Lupus, too. My dad has shown signs of possible arthritis in his knee.
Thanks for reading. Based on your knowledge, could it be lupus? I'd appreciate any input or suggestions you may have.
While I am not able to say exactly what your symptoms may indicate, I can say that it does sound as if you are suffering from some form of an auto-immune disorder. The problem with making a definative Lupus diagnosis is the fact that the symptoms of Lupus can mimick so many other auto-immune disorders. There are between 11-13 criteria for a Lupus diagnosis and the standard says that you must fit into at least four of the 11-13. From what you've described, you may have at least four. However, there are some specific tests that must be run in order to help your doctors make that determination. Here are 11 of the criteria:
* Butterfly (malar) rash on cheeks, Rash on face, arms, neck, torso (discoid rash)
* Skin rashes that result from exposure to sunlight or ultraviolet light (photosensitivity)
* Mouth or nasal sores (ulcers), usually painless
* Joint swelling, stiffness, pain involving two or more joints (arthritis)
* Inflammation of the membranes surrounding the lungs (pleuritis) or heart (pericarditis). This inflammation is called serositis.
* Abnormalities in urine, such as increased protein or clumps of red blood cells or kidney cells, called cell casts, in the urine
* Nervous system problems, such as seizures or psychosis, without known cause
* Problems with the blood, such as reduced numbers of red blood cells (anemia), platelets, or white blood cells
* Positive antinuclear antibody (ANA) test
* Laboratory tests indicating increased autoimmune activity (antibodies against normal tissue).
Since you have several symptoms of Lupus, your doctor should order a series of tests to examine how well your immune system is functioning. Your doctor will be looking for evidence of autoantibodies. Remember, there is no one test that can definitely say whether or not a person has lupus but, there are many laboratory tests which help your doctor in making a lupus diagnosis.
Routine clinical tests for SLE include:
* sedimentation rate (ESR) and CRP (C-reactive protein) binding, both of which are frequently elevated in inflammation from any cause
* serum protein electrophoresis which may reveal increased
* gammaglobulin and decreased albumin
* routine blood counts which may reveal anemia and low platelet and white cell counts
* routine chemistry panels which may reveal
* kidney involvement by increases in serum blood urea nitrogen and creatinine
* abnormalities of liver function tests
* increased muscle enzymes (such as CPK) if muscle involvement is present.
These kinds of abnormalities alert the doctor to the presence of a systemic disease with multiple organ involvement.
The most commonly used blood tests used to diagnose SLE are:
* Anti-nuclear antibody test (ANA) to determine if autoantibodies to cell nuclei are present in the blood
* Anti-DNA antibody test to determine if there are antibodies to the genetic material in the cell
* Anti-Sm antibody test to determine if there are antibodies to Sm, which is a ribonucleoprotein found in the cell nucleus
* Serum (blood) complement test to examine the total level of a group of proteins which can be consumed in immune reactions
* Complement proteins C3 and C4 test to examine specific levels.
As I said, it cannot be determined if you do, in fact, have Lupus unless all of the above are done. There are so many other auto-immune diseases that you could have that it is quite impossible for us to say, one way or the other, what you might have. I will say that each symptom that you've described has bee a symptom suffered by some of us who have been diagnosed with Lupus.
I wish you the very best, please keep us advised as to how your diagnositc process goes and what you find out!!
Peace and Blessings
Saysusie, thanks so much for your reply. I decided after posting this that I'm going to send a more detailed version to my Dr. so he can have it on record.
I plan on investigating the other autoimmune diseases, and find out which ones I can definitely rule out.
Thanks agin for the info.
Welcome to the Forum! I'm so glad that you found us!
Please just remember that anytime you need advice, support, information or just to vent or chat, we're all here for you!
I have a similar issue. I caught a very bad virus when I was in Austria on a Music Tour with my school in April last year. Since then, I have been extremely ill. My doctors know that I have an auto-immune disease, they just don't know which one! They think that I have Cutaneous Lupus (skin Lupus) because of my malar rash and the fact that I am very photosensitive and my Rheumatologist thinks that I may have something called Behcet's Syndrome. However, they have not ruled out Systemic Lupus yet, but all of my bloods came out clear. I do have Sjogren's Syndrome, however.
If you suffer with a lot of ulcers - oral, nasal, anal, vaginal, internal (colon, stomach, small intestine, etc.), etc., then Behcet's Syndrome is something which you may want to take a look at. It is supposed to be very rare though. Apart from the ulcers, Behcet's Syndrome usually involves/consists of eye problems, skin lesions, joint problems, bowel problems, depression, ear problems, chest problems, veins, arteries, central nervous system and gastro-intestinal involvement. Behcet's Syndrome is considered to be a vasculitic disease, so it can really attack any organ where there is blood flow. Sometimes, the kidneys and the rest of the urinary tract are also involved.
I hope that this helps and that you get a diagnosis soon!
Keep well and God bless!
After reading some other posts, I forgot to add...I'm allergic to penicillin and sulfa.
The sulfa/sulfer usually triggers my asthma, and makes my throat/chest burn. But I found out I was really allegric to it when a Dr. prescribed an antibiotic that had it. My face puffed up, with a rash across my face/cheeks, even my lips and eyelids swelled up. It was bad. It's funny how we try to block out bad stuff, isn't it?
Another thing, my dad mentioned to me... Both my cousins who have lupus are redheads, more like auburn. My grandpa on my dad's side had auburn hair. My hair is kinda chesnut brown with a lot of auburn in it. My dad said he remembered when my cousins were diagnosed, they said that of those diagnosed with Lupus there was a very high number redheads.
I've never heard of the redhead thing......
but Sulfa drugs have been known to cause Lupus flares and maybe even start the Lupus process. My internist did not know this and prescribed the drug for me recently. Needless to say, I was upset when I read in my Lupus magazine a few days later that people with Lupus should not take Sulfa drugs!
Missy -- I know what you mean. I freaked out when I woke up to a puffy face and big ol rash across my face. It really scared me...interesting that it may start the lupus process. I think my having mono was really the starting point for me.
I plan on asking for the complete lupus testing...but it seems that the signs my be pointing toward lupus. I just want answers, ya know?
So I did some "homework" and read through a long list of all autoimmune diseases. Only two have similarities to symptoms I've experienced.
Lupus and possibly Crohn's disease. I've been working on a letter to my Doc outlining my medical history. It's been quite eye-opening to see it all in black and white.
Today my whole body aches.... I could really go for a nice massage! and I have some hives....who knows what that's from, sheesh.