Not Mitochondrial Disease. Probably Not Lupus, but...
Posted May 01 2013 12:00am
I'm up later than usual because I was home sick and slept nearly all day.
Yesterday I received the last of my nuclear DNA test results. After both my mitochondrial DNA and nuclear DNA test results showed nothing of clinical significance, it's pretty safe to say I don't have mitochondrial disease. They did find a few interesting abnormalities, but nothing that warrants a diagnosis. I'll try to remember to give specific explanations and results from the tests in a future post.
The nurse who called me said that my ANA level was the "same" as my last ANA level. She said my ANA was 1.6. I was a little confused. My ANA result in 2011 was 1:160. Other than having ones and sixes in both numbers, I didn't really understand how those two numbers were the same.
Just to make sure I was hearing things correctly, I repeated the numbers back to the nurse. "So a 1.6 is the same as a 1:160 result?" She said yes. She continued and said a 1.6 is a "negative" result and a positive result would be in the "tens of thousands." I tried to get clarification about the numbers, but she wasn't able to answer my questions very well, so I gave up.
It's my understanding that a 1:160 ANA is considered a positive result (albeit not that high). If a 1:160 is positive and a 1.6 is "negative" (according to the nurse), how can these numbers be "the same"?
The nurse assured me I didn't have lupus because my result wasn't "high enough." Something being "negative" and something being "not high enough" mean two different things to me. I wondered, how could she know that I don't have lupus if the doctor never asked me about any of my symptoms other than the rashes? I can only assume she was repeating what the doctor told her to tell me.
The nurse then said I should get monitor my rashes and be sure to come in as soon as they flare up again. She also said the doctor thought I should get my ANA retested in six months. Okay, if my results were "negative" and they don't think I have lupus, why would I need to get retested in six months?
After I hung up I tried to find something online that has a comparison chart of the two values. No luck! however, I did find a couple of message boards with people mentioning having a 1.6 and getting treated for lupus. Very confusing...
I've decided to go see the same rheumatologist I saw two years ago the last time someone else suspected lupus. I have an appointment with him for about four weeks from now, so I am again in a wait-and-see mode. I have great respect for this rheumatologist because he's the one who figured out I have fairly significant muscle weakness and suggested I see a neurologist.
I'm also glad I'm going to see him because I've been having pain and stiffness in my finger joints on and off for the last few months, and I wanted to ask him about that.
I also plan to make an appointment with my neurologist (I will probably call tomorrow). Though my energy levels have improved dramatically thanks to the high levels of CoQ10 I've been taking, my muscle weakness seems to be worse lately. I'm not sure if it's because I've been more active (too active?), or if it's something more problematic.