Sharon Koch

Type of Porphyria

Acute Intermittent Porphyria (AIP)

Sharon Koch

For me it started in the mid 1960’s when I was in high school.  My first symptom started with confusion.  I couldn’t remember my class schedule.  I had to write it down and keep it in my notebook.  Then it started with the doctors.  I would be “patted on my head” and they would tell my parents and me that this was just being a teenager, and that it was normal.  Nothing to worry about.  This was only the beginning. I only got worse.  

Then it was depression, extreme muscle pain and weakness, low back pain and abdominal pain, sometimes severe and then more confusion.  Also, i had no appetite and lost a large amount of weight in just a couple of weeks.  This went on and off for years.  There were days that my hands and arms shook so badly that I couldn’t do my work (I’m a Medical Assistant), and I loved my work.  And then the same story with the doctors and even different doctors.  They thought I wanted attention and time off from work.  I refused the time off that my doctor, my boss, wanted me to take because I thought if something was going to happen, I wanted to be near my doctor.  I was really scared!  

I had to have major surgery and the abdominal pain that started after that became so severe that for the first time my doctors became concerned.  Maybe it wasn’t all in my head.  The medication that I was given made my pain even worse.  Needless to say my family and I were really scared.  I had no idea what was happening to me.  At one point my muscle weakness was so severe that I couldn’t stand up without someone to help me.  My doctor thought I had MS.  And, again, the tests came back negative.  I was told that I was exaggerating all of my symptoms.  It’s not normal to have all of these problems and live in pain and to be told “not to worry, all the tests are negative”. 

These symptoms went on for decades. Then in the mid 1990s,  I was going through a really rough time with muscle pain and weakness, low back pain, abdominal pain and depression.  I started with something new, nerve pain and numbness in my thighs and mid back.  The numbness continues to this day.  I told my doctor about all of this.  He told me that he wanted to do one more test.  At first, I refused.  I didn’t want another negative result.  I just wanted the antidepressant medication that he had given me in the past.  I hated the feeling of depression.  He finally convinced me, and I am really glad that he did.  About two weeks later all of my questions were answered.  Finally a positive!!!  I have AIP and it only took about 30 years to get an answer.  I had no idea what it meant but I was so happy that it was positive.  I know that it sounds strange to be happy about positive results, but for all of you that have had the same or similar story, you understand! 

The one thing that I feel really bad about is that I passed AIP on to one of my children.  At least my daughter doesn’t have to go through all that I did.  We have an answer to her medical problems.

When my patients used to tell me that something was wrong with them but the doctors couldn’t find an answer, I would tell them not to give up.  They know their body better than any of the doctors.  And I’m living proof!!!