This is a post I have been pondering for a long time.
In my first post after being diagnosed with lupus I described it as that weird disease that is almost impossible to diagnose. Remember how Dr. House always says: “It’s never lupus?” Whenever the younger doctors had a medical case they couldn’t figure out they would always suggest lupus since it has so many random symptoms that come and go and is so hard to diagnose.
The easiest, simplest way to describe lupus is being allergic to yourself. Those of you who know me and my history of crazy allergies are probably thinking, “Of course, Erica would be allergic to herself!!” (As I am allergic to dogs, cats, trees, grasses, weeds, flowers, dust, fresh fruits and vegetables, tree nuts, and even the formeldahyde used to embalm the bodies we dissected in medical school….)
There is no perfect test to diagnose lupus- the diagnosis is usually made with a combination of blood tests and symptoms. The first major blood test is called ANA (anti-nuclear antibody). Only 1 out of 10 people who have a positive ANA actually have lupus, but essentially everyone who has lupus has a positive ANA (so if your ANA is negative you can be pretty sure you don’t have lupus and if your ANA is positive you only have a small chance of having lupus).
This was my first test to come back positive.
There are some other more specific tests for lupus. I’m not going to write about all of them, but will write about those that are important to my case. There are dsDNA antibody and complement levels. dsDNA Ab is an antibody to your own DNA. Our bodies normally form antibodies to foreign things like bacteria and viruses to kill them and protect ourselves from things that are harmful to us. In this case my body has formed antibodies to my own DNA which means I am attacking my own tissues and organs. This can cause a lot of fatigue because the body is constantly busy fighting itself. This also causes inflammation and damage to the organs it is attacking. When there is lots of inflammation the body “eats up” the complement that is floating around and your complement levels fall.
I have positive dsDNA antibodies and low complement levels. Not all patients with lupus get the dsDNA anitbodies and low complement levels, but if you have them it’s virtually diagnostic. Lupus patients with this profile also tend to end up with more kidney inflammation.
So what organs has my lupus affected?
Kidneys: This is the biggie. This is what most lupus patients fear. Up to 50% of lupus patients can have kidney problems. This used to be one of the biggest killers of lupus, but now with different treatments including chemotherapy drugs, dialysis and transplants this doesn’t kill as much. One of the ways to test for inflammation is watching for protein in your urine. Your kidneys are like a strainer. They shouldn’t let protein through into your urine. When the kidneys get inflamed this barrier gets weak and protein can spill through the cracks. I’m pretty sure I have had some kidney inflammation because I have been spilling protein in my urine on occasion. The first good news is that my recent 24 hour urine (where I collected my pee for 24 hours) showed the normal amount. And the second good news is that I know that I have been losing some protein since 2003 (old lab tests) and so far my kidneys are hanging in there. My doctor is checking this every 2 months.
Heart: Lupus can also cause inflammation of the heart, usually the lining (sac) around the heart. The fancy word for this is pericarditis. I have had intermittent chest pain, but have never had problems exercising, so I never thought too much about it. After my diagnosis, I thought a little more about it. They did an ultrasound of my heart which showed some mild fluid in the space between my heart and the sac around my heart (pericardial effusion) which means there has been inflammation. My mitral valve showed “myxomatous changes” (which basically means they are floppier than normal) with mitral regurgitation (backward flow). These changes aren’t usually life threatening. They will watch them and give me anti-inflammatory medications as needed to calm it down.
Joints: Most lupus patients get random swelling and pains in their joints. I just get some random achy joints (not much to write home about) and achy muscles. I mostly have achy lower legs. Can’t complain too much here.
Ovaries: This is one of my biggest fears currently. It looks like I have had inflammation of my ovaries causing “decreased ovarian reserve” (which means my ovaries are running out of life). It’s pretty
amazing scary that they now have a test for your biological clock. It’s called AMH (anti-mullerian hormone). This test can tell you how much time your ovaries have left. Mine are looking like they are 40+ and I’m only 33 years old. They predict I may go through menopause in a few years- and many lupus patients do have earlier menopause than the general population. Praying and keeping my fingers crossed that my ovaries can hang in long enough to produce 1-2 good eggs. I want a “little Jake” and a “little Erica”.
Bladder: This is a very uncommon symptom, but actually has been my main symptom. This is probably why it took so long for lupus to be diagnosed in me. I have inflammation of my bladder wall (cystitis) which makes it feel like I have a bladder infection- a lot of the time. And if you’ve ever had one before, you know how uncomfortable it is. Over the past decade I have seen multiple urologists (bladder specialists) and have been given many random diagnoses: anxiety, viral infections and allergies of my bladder. On the bright side, I don’t think I’m going crazy anymore. I now have something to curse when I’m feeling miserable.
Lupus can do all sorts of other random things, but this is the main stuff on my mind (for now). Lupus is a chronic disease that waxes and wanes throughout life. It is possible to go into periods of “quiet” where it isn’t very active. At this time there isn’t a cure. It’s very hard to not worry about all the “what if’s”. But I am learning that everybody has “what if’s”– they just aren’t all so apparent.
Life is precious, and we need to enjoy it a day at a time. This really makes me realize the importance of family and friends.