I didn't have the skin biopsy after all.
When I got to the doctor, she did not think the rash was "active" enough to warrant a biopsy, so she ordered an ANA blood test instead. (For the record, my rash was not active at all when I first went to the dermatologist, which is why I didn't have the biopsy then.) To her credit, she doesn't believe in doing a biopsy if the information obtained might not be helpful.
It turns out that the type of biopsy she wanted to do is called a "punch biopsy," which involves cutting out a small chunk of skin about the size of a pencil eraser (imagine a paper hole punch). After that lovely image, I'm actually ok not having the procedure just yet. I still have unpleasant memories (and a nasty scar) from my muscle biopsy.
I still may have a punch biopsy, but it will depend on my ANA blood test results and if/when the rash comes back more strongly. The doctor said I could just call the office during normal work hours as soon as my rash reappears and I'll get scheduled for that same day or first thing the next day (assuming it's not a weekend).
The doctor also thinks it's entirely possible that my rashes are due to Polymorphous Light Eruption (PMLE), which some consider a kind of allergy to the sun; others call call it "sun poisoning." (Here's some info from the Mayo Clinic. If you're a science nerd, read the medical explanation on Medscape.)
If my ANA comes back negative or really low, I probably have PMLE. If it's positive, it's probably lupus. Either way, I have something. Knowing my weird body, I'm probably allergic to the sun. Fun times.
At this point, there's nothing for me to do except wait for my ANA results. I should be used to waiting for medical test results by now, but I'm not.
I hate waiting!
To be honest, I wouldn't mind a lupus diagnosis because it would give me something definitive that most doctors would both believe and understand. I look so young and fit on the outside that I have a hard time getting doctors (and others) to understand how miserable it can be to live in my body.
I have so many random symptoms which are not typically associated with ME/CFS that I'm no longer convinced I have it. On the other hand, I'm not convinced that I don't have it (can I use a double negative?).
I'm not scared of lupus.
A lupus diagnosis really wouldn't change much for me; it would neither cure me nor make me worse. I would still live the way I'm living and feel the way I'm feeling. The fundamental shift would be in the way others perceive me.
More would believe me without question.
When I got to the doctor, she did not think the rash was "active" enough to warrant a biopsy, so she ordered an ANA blood test instead. (For the record, my rash was not active at all when I first went to the dermatologist, which is why I didn't have the biopsy then.) To her credit, she doesn't believe in doing a biopsy if the information obtained might not be helpful.
It turns out that the type of biopsy she wanted to do is called a "punch biopsy," which involves cutting out a small chunk of skin about the size of a pencil eraser (imagine a paper hole punch). After that lovely image, I'm actually ok not having the procedure just yet. I still have unpleasant memories (and a nasty scar) from my muscle biopsy.
I still may have a punch biopsy, but it will depend on my ANA blood test results and if/when the rash comes back more strongly. The doctor said I could just call the office during normal work hours as soon as my rash reappears and I'll get scheduled for that same day or first thing the next day (assuming it's not a weekend).
The doctor also thinks it's entirely possible that my rashes are due to Polymorphous Light Eruption (PMLE), which some consider a kind of allergy to the sun; others call call it "sun poisoning." (Here's some info from the Mayo Clinic. If you're a science nerd, read the medical explanation on Medscape.)
If my ANA comes back negative or really low, I probably have PMLE. If it's positive, it's probably lupus. Either way, I have something. Knowing my weird body, I'm probably allergic to the sun. Fun times.
At this point, there's nothing for me to do except wait for my ANA results. I should be used to waiting for medical test results by now, but I'm not.
I hate waiting!
To be honest, I wouldn't mind a lupus diagnosis because it would give me something definitive that most doctors would both believe and understand. I look so young and fit on the outside that I have a hard time getting doctors (and others) to understand how miserable it can be to live in my body.
I have so many random symptoms which are not typically associated with ME/CFS that I'm no longer convinced I have it. On the other hand, I'm not convinced that I don't have it (can I use a double negative?).
I'm not scared of lupus.
A lupus diagnosis really wouldn't change much for me; it would neither cure me nor make me worse. I would still live the way I'm living and feel the way I'm feeling. The fundamental shift would be in the way others perceive me.
More would believe me without question.
2 comments:
Good to hear. You are making progress, so that is an achievement regardless of the outcome.
Other people would believe you? That makes me angry just reading that someone would not believe you. I do not tell many people I am sick. I don't think I could handle their reaction if it was anything less than respectful. What others think doesn't matter. When we suffer, we suffer alone.
Glad you are pushing through with proper testing!
Hi readyforwhat7 - Thanks for the thoughts. Your comments inspired my upcoming blog post.
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