Tuesday, May 28, 2013

Part I: Um, So It Might Be Lupus...

Wow.  This month has been full of medical drama with skin biopsies, ignorant nurses, and arrogant dermatologists with a couple of amazingly awesome doctors sprinkled in.

Read my entry Not Mitochondrial Disease, Probably Not Lupus for background.

I received the copy of my ANA results, and they were indeed the same as my previous results (1:160).  Though the nurse told me over the phone that my results were negative, 1:160 is a POSITIVE result and the report actually says "positive" by my number.  I know nurses are human and make mistakes, but telling someone test results are negative when they are actually positive is a major error!

In the meantime my sun rash came back, so I went back to the dermatologist's office assuming I was going to get a biopsy and saw a different doctor in the same practice.  That doctor took one glance at my rash and told me I had keratosis pilaris, which is pretty much like acne.  He didn't look closely at the rash or ask me any questions about my symptoms.  I told him the previous two doctors had mentioned lupus or PMLE as possibilities and asked him about getting a biopsy.  He said a biopsy wasn't necessary because I couldn't have lupus since my ANA was negative.  I told him I had a 1:160.  He looked surprised and said "oh, that's positive."  He then looked at the nurse (the same one who called me before) and said to her: "I thought you said it was negative."

The doctor ended up doing a scrape biopsy on the inside of my right arm, where there was no rash.  I told him that I was confused because it was my understanding that I was supposed to get a biopsy of the rash area.  He said there was no point in doing a biopsy where the rash was because it would only show keratosis pilaris.  Really?  He was that sure of his diagnosis.  He would not answer my questions about lupus or PMLE and dismissed my concerns about doing a biopsy on an area of active rash.

After he left, I tried to get clarification with the nurse, but she was extremely rude and mean to me (probably because she was mad she got in trouble for giving the doctor incorrect info about my ANA results).  When I said I was just trying to get answers to my health questions and figure out why I wasn't a normal thirtysomething, she responded in a terrible tone saying that she's not normal either and everyone has problems.  Ouch.

Yup.  With one comment she completely dismissed the last 15 years of my life -- the years I couldn't work, the ER visits and  hospitalizations, the times on disability, the times I had to be pushed around in wheelchairs because I was too weak to walk, the anaphylaxis, the hair loss, the isolation, the tears.  I realize the nurse must have been having a bad day, but she still managed to make me feel completely crushed and invalidated.  I cried a lot that evening.

The next day or so I decided that I needed to go back to the dermatologist -- the first one who actually suggested the possibility of lupus -- for a biopsy of the active rash area because I didn't know how long my sun rash would stay around.  I got an appointment with her that afternoon.  I told her about my experience with the other doctor in her practice, and she defended him.  Even though she did not think my rash was keratosis pilaris, she defended him and said dermatologists really hate it when patients question their diagnoses.  I was still feeling pretty emotional about my previous encounter, so I immediately burst into tears.    

The doctor backtracked a little and said she understood how frustrating it can be for patients trying to get answers.  She also said it would be a good idea to have a biopsy of a rashy area.

I need to go to bed now.  I'll write more another day.  I still have to talk about my recent neurologist and rheumatologist appointments, as well as the skin biopsy results, of course.

By the way, I do NOT have keratosis pilaris.

Stay tuned...

Wednesday, May 1, 2013

Not Mitochondrial Disease. Probably Not Lupus, but...

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.  

I received my ANA results by telephone today.  If you'll recall, I went to a dermatologist for rashes I'd been getting lately, and she mentioned the possibility of lupus (see Looking for Lupus AGAIN?! and No Skin Biopsy For Lupus. Blood Test Instead.).  

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.  

Anyway, that's the update.  Good night!