Discussions By Condition: Medical Errors

Misdiagnosed with bug bites and phlebitis for Erythema Nodosum

Posted In: Medical Errors 1 Replies
  • Posted By: Rebeccastrecker
  • April 9, 2007
  • 06:21 PM


My life with Erythema Nodosum
My name is Rebecca Strecker and I have had a rare condition called Erythema Nodosum for the past 38 years. My first experience with EN came in the summer of 1968 when I was in my early 20’s. It started like a bad case of the flu and then I got bite like appearances on my lower legs. The bumps were red, hot, painful and tender. I felt malaise and ran a fever. After a couple weeks I felt well enough to return to my summer job which thankfully required no standing.
My doctor said it was a reaction to bug bites, and eventually it did resolve. A couple years later the nodules reappeared and this time I asked my Ob/Gyn what I should do. He said I had phlebitis and prescribed support stockings. After another bout of EN I showed the lumps to my new Ob/Gyn, and he knew it was one of the "erythemas" and sent me to a dermatologist. I was correctly diagnosed on the spot….5 years after my first EN episode.
I was happy to know what I had, but disappointed to hear that there was no effective treatment. The dermatologist said I had a mild case since it responded quickly to bedrest. Since all tests showed I was healthy, he saw no need to do a biopsy.
I did not have any related condition, and no "trigger" was ever discovered for my EN flare-ups. I was therefore thrown in the "idiopathic" EN category.
I lived my life with EN going in and out of remission. I married a wonderful guy and explained my EN to him. He wanted to know if it was contagious, and I had asked my dermatologist that question years ago and he told me "no".
Although EN has colored my life in the work I have been able to do, I do not feel it took away anything from the happiness and quality of my life. I became quite interested in health issues and read all I could find about EN in medical books, but I never knew a single person who had it. In that way, I did feel alone.
When my husband and I got our first computer three years ago, I started to read what I could find online with regards to EN. I thought, perhaps, a cure had been found. I was surprised that not much research had been done on EN and that treatments weren’t much different from ones I was familiar with.
Then I started to search the net for others who had EN, and to my delight I did find some. We talked about our similarities and differences. It was so wonderful to finally connect with others who could relate to my experience.
We decided it would be great to start our own EN support group. With my husband’s encouragement, I set up a Yahoo Group, and the friends I’d found on-line joined up.
The last 3 years have been so very exciting for me. I have met many new friends who have EN, and our group site has a wealth of resources for those with EN and related conditions. We have made friends with people in the Sacroidosis and the Crohn’s community where research is ongoing. We have every reason to anticipate that research of these disorders will in time produce effective treatments and cures that will work for EN as well.
I feel honored to have the support of my husband, my EN group, and my network of friends.
I hope you will join us!

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  • when my daughter was 5 (now 16) She got 2 lumps on her neck (lymphnodes)the dr put her on 10 days of antibiotics. When she was finished with that she still had the lumps the dr give 10 more days of antibiotics no change. I called the dr and demanded a biopsy. the biopsy came back they said she had cat scratch fever. What? She had no symtoms of CSF what so ever. So I watched for new lumps on her neck and they didnt retun. About a month later she was sitting on the floor and I noticed she had a bunch of purple dots (Small Bruises) on the bottom of her foot. Took her to the Dr. If i remember right she did blood work on her. I think something about her white blood cell were low or high. by that time the bruises had gone. A couple day later she got bigger bruises with lumps. The dr said take her to the er. They admitted her for 2 days. The peds dr diagnosed her w/ henoch shonline purpura. Our family physician disagreed she said the blood work didnt show that. Thats when we started going to evey specialist there is . one said kikuchi disease, Another agreed with Henoch. one said allergies. Every time she broke out we went to another specialist. So out family Dr called me and said next time she breaks out call me no matter what time it is. So the next time I called her. She sent me to the childrens hospital Where her friend worked about 10 minutes away She told me to go straight to the childrens ward her friend would meet me at the elevator. Her friend who is a pediatrician looked at my daughter while on the phone with our Dr she was asking about her blood work and looking at the bruises and lumps and said this is erythema nadosum. I just thought yeah ok. So I went home and looked it up on the internet It sounded right. So I found some pictures of it and it looked just like what she had. It was the only diagnosis that sounded right. Over a years time she broke out about 6 time it seems to me that whenever she got really cold she would break out. She was a skinny kid and whenever she went out to play in the spring and winter she would be like an ice cube. Anyways after that year it just seemed to go away. She still gets really bad leg pains to the point she gets up in the middle of the night and soaks in the bath. And she get really bad migranes with blurred vision is that commom with EN? Could EN return after all these years? Or does this happen in some cases where you get a bout of it and never see it again? Sorry so long Im going to go check out your site thanks
    Micky6608 6 Replies
    • February 7, 2008
    • 09:04 AM
    • 0
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