Thursday, January 7, 2010

You're not weak enough...

After my new doctor dropped the bomb that she thought I had Lupus, she prescribed 40mg per day of Prednisone. She also scheduled an appointment with a dermatologist for a skin biopsy that would confirm whether or not I had Lupus.

The Prednisone helped tremendously. By the time I saw the dermatologist, my legs were almost pain free and my rash, although not gone completely, was much better.

The dermatologist asked me to go through all the symptoms again. He checked the rash on my face and on my hips. He then did a quick strength test of each arm and each leg. I was able to push his hand back quite easily with each limb.

The doctor said, "I thought you may have something called 'dermatomyositis', but you are not weak enough so I don't think that's what you have." I had never heard of this disease before, but I committed the name to memory.

Since the first time I called my original doctor's office for an appointment, I had been scouring the internet trying to diagnose myself. My sister has Celiac Disease (auto-immune gluten intolerance) so that was my first target. What I found was that my symptoms fit about 100 different diseases. I would research this "dermatomyositis" when I got home from my appointment.

The doctor took the skin biopsy from my hip and wrote out an order for what appeared to be 50 different blood tests. He then told me that Prednisone can be a very nasty drug if you are on it very long and he wanted to taper me off. I don't think he would have done this had I appeared "weak enough" to him. I was scheduled for a return visit in a month and left to have blood drawn.

I'm not sure what exactly he ordered, but I know at least a CPK (Creatine Phosphokinase or muscle enzyme), SED rate (erythrocyte sedimentation rate) and an ANA (antinuclear antibody). The SED and ANA are commonly used when trying to determine an auto-immune diagnosis and the CPK because of my muscle involvement. I would have to wait a month for those results.

After going home, I followed the schedule and tapered down my Prednisone. When I did this, my symptoms came back with a vengeance.

The rash now covered my entire face, neck and scalp. It was so red in spots it looked purple. I had red and purple patches over my knuckles, elbows and knees. My thighs were so painful, I did not want to be touched. I had trouble standing from a seated position. I could barely hold my arms above my head.

I did my research on "dermatomyositis", and I was able to place a check mark next to every symptom. I knew this was it and I knew the doctor would see it when I returned.

I went back to the dermatologist in this condition. Once he saw me and did another quick strength test, he said it was very obvious to him now that I did in fact have dermatomyositis (DM).

After the exam, the doctor went over my blood work which confirmed the diagnosis.

I stated in a previous post that I was "lucky" to have the unsightly rash. The reason I say this is that DM is a rare disease. There are many people in the medical field who have a) never heard of it or b) have heard of it but may never see a case in their entire career.

The rash was a red flag to this dermatologist. The fact that he had both heard of this disease and that he made the connection due to my rash make me a very lucky person. I was diagnosed early when many people may have gone a year or longer mis or undiagnosed causing permanent muscle damage and in some cases death.

Because this is a rare disease, every doctor I went to wanted every intern and med student in their grasp to meet with me. This was a great learning experience for them and I was more than willing to let them have exposure to this rare disease. If this helped them diagnose someone early on , it was well worth the few minutes I spent with each of them.

My first experience with the "newbies" was this particular visit to the dermatologist. But that will wait until next time.


  1. Very inspiring! Kudos to you for being your own health advocate and continuing to seek the correct treatment. My prayers are with you!

  2. I am really glad you are telling your story. while I know bits and pieces. it is always good to know the full story.
    Hugs ...