Lupus

Lupus

In late December 2015, I started having bouts of dizziness. It wasn't terrible. From time to time my head would spin a bit. I just figured it was stress or being overtired so I brushed it off and went about my day. I didn't even pay attention to it until one morning while eating breakfast with Rizzo and Cece I stood up to take my empty bowl back to the kitchen and I staggered just the slightest bit. It was at that point that Rizzo forced me to get an appointment with my doctor.

It was three weeks or so until I got an appointment. My doctor was out on paternity leave and I wasn't really bothered by the dizzy spells (which maybe happened once every 3-4 days) so I made an appointment for the first day he was back. I made my way into the office feeling kind of silly because I wasn't really have major issues just feeling like I was clumsy. I figured the worst thing that could happen is my doctor called me a fool for making the appointment but better safe than sorry.

Oh, before I forget, I should tell you the only real concern I had was that there was a problem with my heart. One of the symptoms my grandmother, Nana, had before she had her pacemaker was being clumsy and getting dizzy. It turned out that she needed the pacemaker and she was losing her balance because of her heart. My Dad also had a stroke because of a slight hole in his heart that has been there since birth. Of course, both of these things happened when Nana and Dad were older (sorry to say it Dad, but you're old) so I wasn't too terribly concerned but it was the first thing in my mind.

I went to my appointment and got checked out by the doctor. I'll brag a bit about how happy he was to see me doing so well with my weight loss. I had high blood pressure and a high heart rate when I started my weight loss program (which my first step was seeing this doctor for the first time) both of which had come down to normal, healthy levels because of eating right and exercise (who knew the doctors were right about this). He told me that unfortunately most patients don't take doctor's advice to heart and keep doing the same things and then end up on medication or just in terrible health because they didn't do what the doctor recommends. I'm glad I did.

After not-so-graciously accepting his compliments on my weight loss he went about his exam. First step was obviously the heart and I'm happy to report that my heart was looking strong and working well. He also checked out my ears as an inner ear infection can cause dizziness. Nothing there either. Nothing obvious was coming up so we chatted some more about various aches and pains. A few weeks prior to my visit I had twisted my knee out running and it continued to bother me. I figured that was just a result of me continuing to run on my sore knee instead of taking a rest so it could heal. I also had a sore neck that day after I had slept on it wrong a few days before and it was finally getting back to normal. Still nothing out of the ordinary was popping out so my doctor sent me off to get some blood work done as he continued to rule out some things. I went and got my blood drawn (which is one of the most terrifying things in the world to me) and then promptly forgot about the entire ordeal.

It was January 25 when my doctor gave me a call with my results. Don't think that just because I remember the exact day I got some devastating news about my health. I remember the exact day because (1) January 23rd is my birthday, (2) we had three feet of snow fall on my birthday, (3) I had to fight my way into work that day against all the snow plows, and (4) the doctor called me himself instead of a nurse because no one else could make it into his office, including patients, so he figured he would catch up on returning calls to patients with lab results. We went through my results and there was one test that raised a red flag. I didn't understand anything he said about the specific results because they were all very technical, but the bottom line was he wanted me to see a specialist because this test was an indicator of psoriatic arthritis. Psoriatic arthritis is a type of inflammatory arthritis with symptoms that include swelling and pain of joints (like my knee and neck) and could possibly be causing my dizzy spells. He calmed my nerves by telling me this isn't by any means a life threatening issue or even a dire issue to address immediately but that I should see a specialist in a reasonable amount of time.

Reasonably schmesonably was my thought and I called the specialist right after I hung up the phone with my doctor. The arthritis specialist had a packed schedule, as specialist tend to have, and since it wasn't an emergency I didn't have my appointment until six weeks later on March 4. I wasn't nervous about the appointment. The dizzy spells seemed to have gone away and my neck didn't hurt. Of course, my back was just a bit sore and my hands were stiff but I figured this was from working out the night before so I assumed I'd go see this specialist as a precaution then be on my merry way.

The appointment started with an interview with the physician's assistant running down all the questions that seemed reasonable when trying to determine if someone has an arthritic-type disease. First question was why are you here today. I explained how my doctor recommended that I come in because he says something, I don't really know what, in my blood tests that indicate possible psoriatic arthritis.

Do you have joint pains? Well, today my back is a bit stiff and my fingers are sore but that is probably from lifting weights last night.

OK, do you have any rashes or psoriasis (a reasonable question considering I'm here for possible psoriatic arthritis and psoriasis is one of the first symptoms). No, not really. I have these red dots that are all over my legs from about the knee down but I've had those for ages.

Oh, OK let's take a look. Do they itch? Only in the winter when it gets really dry.

Are you sensitive to sun? Oh yes, I get sunburned by thinking about being out in the sun.

OK, let me take a look at some other areas. Are your cheeks always that red? Yes, I've had rosey red cheeks as long as I can remember.

OK, well, let me put all this in the computer then the doctor will come in and chat with you. Sounds good.

The specialist came in, asked a few more questions, reviewed everything we talked about before, examined my legs and hands and face, and then started going through the results. She didn't think it was psoriatic arthritis. Great! I didn't want to have that anyway. Doesn't sound like fun. Then she went through the blood test results from my doctor indicating why he asked me to see a specialist. One of the tests performed is called an ANA Comprehensive Panel that includes testing for an antibody called Anti-DNA (DS) AB QN. I don't know what any of that means but that is what is says on the test results. This antibody is supposed to be low in the blood at a range of 0 - 9 units (whatever the units happen to be). My test came back at a level of 17, which is nearly double the amount that indicates a positive of this test. This test isn't an indicator of psoriatic arthritis but is the first indicate of another potential issue. Lupus. This test, combined with the red spots all over the legs (not psoriasis) which also happens to be slightly on your arms (hard to see because I have so many freckles), the rosey red checks, and the stiff joints (which I was attributing to exercise), indicates you may have lupus.

OK, so at this point I may have lupus. I've heard of lupus but I had no idea what it is. I have to give some more blood in order to perform a more extensive screening to determine if I really do have lupus. So at this point there is no definitive diagnosis. Even so, the specialist (she is a doctor but I'm just calling her "specialist" in order to differentiate between her and my primary care physician, or doctor) has me set up a follow up in three months even though the results of the blood test won't be ready for another week. I figure that can't be a good sign but I'm not going to stress about it because that won't help anyone with anything.

I head home after the doctor's appointment fully intending on getting work done. It is the midst of busy season, after all, and I can't just take an afternoon off simply to go to a doctor's appointment. Instead I spend the afternoon trying to learn about lupus. I literally had no idea about lupus other than knowing it exists. So, here is the general idea that I've tried to put into my own words instead of some medical parlance that no one can understand. Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, organs). You see, when the body gets sick (common cold, strep throat, ear infections) the body creates antibodies to fight off the bad guys causing the illness. In people with lupus, the body can't tell the difference between these bad guys (common cold) and the good guys (like, you know, my beautiful healthy skin) so the body keeps creating these antibodies that attack healthy tissue.

Let me put it in a more "Green Bean Conspiracy" kind of way. People with lupus have the Incredible Hulk of immune systems. When people with lupus have a cold their immune system attacks that cold just like everyone else. But their immune system is angry. It starts glowing green and will attack anything in its path because it can't tell the difference between good and bad. It just wants to attack so the immune system, just like the Hulk, will start attacking good guys because they happen to be in the way.

I spent some time on the Lupus Foundation of America website to learn more about what I may possibly have and it included some good general facts about lupus that I want to share:

  • Lupus is not contagious, not even through sexual contact. You cannot "catch" lupus from someone or "give" lupus to someone.
  • Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease. However, some treatments for lupus may include immunosuppressant drugs that are also used in chemotherapy.
  • Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
  • No gene or group of genes has been proven to cause lupus. However, other studies strongly suggest that genes are involved in the development of lupus. Although lupus can develop in people with no family history of lupus, there are likely to be other autoimmune diseases in some family members.

So, I spent the next week in the world of the unknown. It was probably a mistake to spend so much time reading about lupus without having a definitive diagnosis. I started looking at the symptoms and convincing myself that I had them all. Extreme fatigue, check (of course it had nothing to do with busy season hours and trying to work out to keep up my weight loss goals). Headaches, of course. Swelling (Do my ankles look swollen to you?). Sun sensitivity (of course, I've always been easy to get sunburn). Hair loss (that explains why I'm bald). Fever (Does my head feel hot to you?). Damn you placebo effect. Damn you right to hell.

Since there was nothing I could do about it I just kept going about my business. I kept working out with my regular running routine. I kept trying to eat right. I kept drinking the occasional beer and enjoying my life as best I could. There was nothing to do but wait for the second set of test results.

The week finally dragged to a close and Friday had arrived. I spent all morning watching my phone waiting for a phone call. Nothing. At noon I called the specialist's office myself. "We are close from 12:00 to 1:30pm". Great. I waited until 1:30pm. I called again. The line was busy. What kind of professional office has a line that is busy? I didn't even think a busy signal existed anymore. What is it, 1988? Just go straight to voice mail, phone! I hung up and called again. Finally a person answered.

I was transferred to the physician's assistant in the office who insisted that she tried to call but my voicemail was full. I didn't have any missed calls or any voicemails but I didn't want to fight about it. This was, in fact, the office that still had a busy signal in the year 2016. I just wanted my results. And the result came in.

"Well, all the other test we did came back negative." That's great news! So I don't have lupus? "We can't say that because the testing for the antibody Anti-DNA (DS) AB QN still came back at 17, or nearly double, the positive outcome." So I may still have lupus? "Yes, but it isn't certain."

The conversation went on like that for a bit longer. The bottom line was that since the single test still indicated significantly high antibodies I still have the risk of lupus. However, I'm not showing any significant symptoms. I may have the occasional and very slight dizzy spells but nothing that is significant. I have red markings on my legs but they aren't scale-like or painful. My joints may hurt a bit from time to time but nothing that is so debilitating that it prevents me from doing anything I want to do. And since there is no cure for lupus the only treatments are primarily for the symptoms and not the disease.

So if I get dizzy I let it pass and then keep on with my day. If it is sunny outside I make sure to cover up with hats and long-sleeve shirts (which I do anyway) and lots of sun block (which I always do). If the red marks get worse (they haven't in years) then I call the doctor to check them out. If my joints ache I take and Aleve and keeping on jogging. Finally, I get more regular check-ups with the specialist. My next appointment is in three months. If all the blood tests come back the same then the next appointment won't be for six months after that. From that point, we wait and we watch.

Do I have lupus? I don't know and the doctors can't tell me for sure. At the end of the day it doesn't matter. I'll keep getting checkups and tests and monitor any symptoms I may have. The moral of the story is to find a good doctor and see them on a regular basis. Get your annual physical. If something is a bit off, tell them. It may be something or it may be nothing. It may be big or it may be small. Better to know now and manage the results then to ignore the issue and hope it goes away. You'll be happy you did.

And don't read anything about anything on the internet. You will convince yourself that you have every disease ever known and you will be dead in 20 minutes.

P.S. I'm not going to give out my doctor's information on this blog because it didn't seem appropriate but I have nothing, literally nothing, bad to say about the guy. When Cece was first born we had to pick a pediatrician for her when filling out the several thousand forms you have to fill out when having a baby. We didn't know any of them so we just picked a local family physicians office (we love everything local) and hoped for the best. The doctor we picked wasn't on call over the weekend so the guy who has become our family doctor came by to examine Cece since he was on call. He was the best, most caring, and comforting doctor I've ever met. So much so that I asked him to be my primary care physician as well as Cece. This guy better not retire or move away because I'll never have a doctor I trust more than this guy. If you are looking for a good doctor contact me directly and I'll be happy to share his information.

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