My story

[Guest guest]

I started my stuggle when I was 26. It started as muscle pain in my

lower back and upper thighs, which I thought was just muscle strain.

After a few weeks of the pain getting worse I went to my family doctor

and she put me on muscle relaxers. I spent the next month in and out

of her office with no resolve and a plethera of medications to try.

My last time there, I could hardly walk and had a visible outbreak on

my abdomen. It scared her and me as well as neither of us had a clue

to what was wrong. I was sent immediately to a rheumatologist and he

started me on Prednisone before doing any bloodwork or biopsies. I

was relieved of the pain and things started to look good, or so I

thought. My next visit with him, I was told that he wanted to do a

biopsy to find out what was really wrong....ok I thought. This meant

going off of the Prednisone for a week before the biopsy. I was

bed-ridden and was taken in to the surgery center in a wheel chair.

After which I immediately went back on the medication and awaited the

test results over the Christmas and New Year Holiday.....making my

wait even longer. Test came back inconclusive....I had to do it

again. I lost yet another 2 weeks of work and being a teacher that's

not good! Finally the test results came back and I had my diagnosis

of EN. No one had ever seen it before and weren't quite sure what to

do. It was a lot of trial and error, but a Prednisone constant! I am

happy to say that after a year on high doses of Prednisone I am in

remission and hoping that it never comes back! I am looking forward

to starting my family and enjoying every pain free day to the fullest.

Does anyone have any research information about pregnancy and EN? My

husband and I would like to start a family and with me being in

remission, we think this would be the best time to start. I would

love to hear from you about your stories or if it is even possible to

safely have a family of our own.