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...


Anonymous said...

I am so sorry those doctors/nurses were so rude to you! What jerks! As if we are not going through enough!? They are in the wrong profession with that kind of attitude. I am sure you were not rude in your questioning. I have a sibling who is a nurse, and she is the most uncaring, hardhearted person I know. Stay strong. Do what is in your best interest, and forget the rest.

I cancelled my mitochondrial appointment on Monday because I wanted to see if I felt better off my thyroid medication. Well, now I am starting to regret it. I am worried the insurance company is going to go bonkers over all my medical claims and raise my insurance premiums. I was beginning to be hopeful that I was getting better, but now I am getting a weird physical anxiety/muscle aches. I'm anxious to get my thyroid labs done faster than originally scheduled since the suspense is killing me. All we want is to get better!

Anonymous said...

Wow. That's a pretty high concentration of Dr. Assholes and Nurse Assholes in one practice. Sorry you had to go through all that just to get those people to do their jobs, Alyson. -Jocelyn

alyson said...

Hi readyforwhat7 - It's sad when people you hope would be allies or at the very least supportive of you are the opposite of what you need. I hope you get some answers!

Hi nopostergirl - You had me laughing with your comment! Thanks for the accurate, yet humorous response.