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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

Mystery Magdalene


by Magdalene Law
August 2009

Hello, my name is Magdalene Law, and I never thought it would be so hard to get HELP!

It started when I was in high school ('01).  The doctor ruled out MS and said it was either an unexplained muscle disorder or all in my head (which didn't make sense to me). I had gone from being number 2 on my cross-country team to not even being able to run around the track, all in one day.

The real trouble all started one day in March of 2008. After I had eaten at a Chinese restaurant, I found myself at home in bed rolling around because I had this painful spot in my abdomen that at first felt like it may be a gas bubble, and then eventually turned into sharper pains with nausea.  I thought that maybe I had just eaten some bad food.  The next morning, I woke up much worse than the night before; the pain was so bad that I couldn't stand up straight.  My mom said that I should go to the emergency room, so that is what I did.

When I arrived at St. Mary's emergency room, I of course waited 3 hours hunched over crying.  Finally, I was able to go back to be seen.  I expressed everything I felt to the doctor.  I also explained that I was born with gastroschisis but had not had any problems since I was a little baby, only the occasional scar tissue discomfort.  Gastroschisis has left me with a large scar from the bottom of my chest to my lower abdomen.  Gastroschisis (gas-tro-ski-sis) is an opening in the abdominal wall through which the internal organs push outside of a baby's body.  During fetal development, the abdominal wall fails to close properly, leaving an opening.

The doctor ordered a CT and pumped me with pain meds.  After that, he came back and told me it was probably just scar tissue or adhesions.  I told him that I had been dealing with scar tissue all of my life and this was not that at all.  He sent me home.

The next morning I couldn't bare it anymore.  I went to see my primary care, and they sent me to a surgeon right away.  The surgeon then hospitalized me, and lo and behold, they found that I had appendicitis from the CT done the night before!  It was not found before because my organs are not in the correct spots.  I am lucky that my appendix didn't burst, and I went into emergency surgery.  After the surgery, they couldn't get the pain under control even though I was on constant pain meds.  I was there for 5 days, and on the last day, I had an episode of constant throwing up.  At this point, everyone had been called in.  I then passed out cold and woke up alarmed to see all these faces looking at me.  For the next 2 HOURS I could not speak or move.  The only thing I could do was blink, so I communicated using 2 blinks for “yes” and 1 blink for “no.”  They thought I’d had a stroke and did an MRI.  I eventually gained back my strength and was told they didn't know what it was, maybe a vagal response.

That was March 2008.  After that, everything was going okay until June 2008.  I started to get slight discomfort after 5 minutes of eating.  It eventually got worse, and it was very painful to eat. It also turned into bloating, acid reflux, nausea, and dizziness.  I went through several tests at a gastroenterologist.  Everything came back normal, and he said that I would have to be seen at University of Michigan or Mayo Clinic. At that point, he said there was nothing he could do for me, and he stopped returning my phone calls while I waited to see a University of Michigan doctor. I am from Ann Arbor, so I went home to see a new gastroenterologist.  At this point, all of my tests had come back negative, so I wasn't expecting much. Thankfully, my stomach-emptying test came back positive.  After 4 hours, a person's stomach is only supposed to have 10% left of their food, but I had 60% left.  THIS WAS GREAT! She said that I had gastro paresis, which is when your stomach spasms instead of digesting your food, and your abdomen tells your brain that you are in pain.  At this point, I was in the fall of my senior year at Kendall College of Art and Design and badly wanted to finish school!  My gastroenterologist doctor and I decided not to try a drug called Reglan because of my past history, so she suggested going on a drug called domperidone.  She said it had worked wonders for several people. I was so happy that I had a doctor who seemed to care and wanted to help.  By November 2008, I thought my problem was solved.  IT HAD ONLY JUST BEGAN!!!!

I started taking domperidone, and within 2 days I had problems.  I was at work hosting, and all of a sudden my legs stopped working and began shaking uncontrollably.  I started to have a rash all over my upper body, my vision narrowed, and I was having a hard time breathing.  My gastroenterologist told me to go to the emergency room immediately.  When I got there, I went into shock in the waiting room, and they sent me back to a bed right away.  My legs couldn't stop shaking, and my breathing was getting worse.  At that time, my boyfriend arrived and was in confusion as to what was going on because I wasn't able to control anything.  While my doctor was talking, I told him that I thought I was going to pass out, and he ignored me.  Then, all of a sudden, I was falling toward the ground and went out cold.  The doctor caught me.  I woke up very lethargic and not able to move or talk, like before.  Eventually, I came to. The nurse decided to tell me that he thought I had anxiety and that I should get help!!!!!!!!!!!!! I told him that this was not anxiety, and he only pushed it more! I WAS OUTRAGED! When the doctor came in, he said the same thing.  I told him that it was not anxiety that there was something very wrong with me.  He didn't believe me but said that since my heart rate was so high I was going to be admitted into the hospital.  My mom drove to Grand Rapids and helped me through the next 7 days!

I was admitted to the hospital and, after a day, I was sent to the ICU because my heart rate was up to 180 beats per minute lying down.  The staff kept telling me to calm down, and I told them I couldn't.  It’s not like I could control this!!!!  After a couple days and some beta-blockers and other meds, I was moved to a normal hospital room.  Every time I ate, I passed out. I couldn't move and could barely talk for 2 or 3 hours each time.  At this time, I was on a liquid-only diet.  Meanwhile, I had 8 doctors all come in one day to see me, including my primary care doctor, a neurologist, and a psychiatrist.  Each one told me that this was all anxiety and that they wanted me to take a medicine for anxiety.  Also, they said that I was a female and trying to do too much with school and work.  I WAS SO ANGRY!  After the first 3 doctors, I was so angry that by the 8th, I was enraged! NO ONE WOULD LISTEN TO ME!!!!!!!!!!!!!!!!!!  I knew that it wasn't anxiety and that there was something very wrong with me.  I take very good care of my mental health and always make sure that I am honest with myself because I have had problems in the past.  The doctors treated me like complete crap and told me that I was a woman at the age of 23, trying to finish school, and that my body was just shutting down.  They said that I was too stressed and couldn't control my emotions, so that was why I was in the position I was in!!!!!!!!  At one point I passed out and was unable to talk, and the doctor ordered the nurses to give me anxiety medicine so that I would stop having the episode.  I couldn't tell them that I didn't want it because I couldn't talk.  They knew that I didn't want to take it because I had refused it earlier.  It was unbelievable.  At this point, my heart rate was at 120 beats per minute.  I could barely walk. I had Parkinson-like symptoms. My breasts had filled with milk from the domperidone. Every time I threw up, I passed out, and every time I ate, I passed out.  After 7 days, they told me that since my heart rate was better, there was no reason for me to stay there and that they wanted to send me to a nursing home because I was unable to take care of myself.  My mom said no, that she would take care of me.  I left the hospital and headed for Ann Arbor to recover for 2 weeks, missing the last month of school and my new job as a graphic designer for FOX NEWS.  I was bummed!

By Jan 2009, I was somewhat able to walk, and I returned to my job and last semester at school.  I also returned to my primary care doctor saying that I still had strange symptoms and had some new ones.  I had a hard time walking. My legs were in constant pain.  I would get dizzy every now and then. I didn't know when I had to urinate; I would just feel pain and know I had to go. I would get really hot and sweat for no reason. After I ate, my chest really hurt, and I had palpitations, as well as swollen hands and feet. I couldn't walk up stairs, had constant urinary tract infections, constant yeast infections, and my ears would get really hot.  She told me that it was only anxiety and that I should really take my medicine.  I have been an athlete all of my life, participating in cross-country in high school and rugby in college (even on all-star college teams).  There was no reason I shouldn't be able to walk!  Something was very wrong.

I have a family history of serious thyroid problems.  Six women in my family have thyroid problems.  I thought that maybe domperidone had triggered something and affected my thyroid.  I was also concerned about having diabetes because every time I ate sugar, my body freaked out, and I got really pale and disoriented. She wouldn't refer me to any specialist.  She said that I would be a waste of their time and that they had to deal with patients who were dealing with actual problems.  So I found my own specialist.  The endocrinologist told me everything looked normal except that while I was in the hospital, my parathyroid was low, but was now fine! Okay, so that wasn't it. 

I kept plugging away at different doctors. Everyone was kind of telling me I was "crazy" because there was nothing wrong with me!  By Feb 2009, I went to see my gastroenterologist doctor for my monthly check up.  By this time, my gastroparesis was not bothering me as much as everything else, and the erythromycin I was taking for that was working. I showed her this strange rash on my foot that would get brighter when I was hot.  It was strange because it was red with a white circle in the middle. She saw me and said, “yes, there has to be something wrong with you.” She thought I might have lupus.  So she said that she was going to send me to a rheumatologist. 

I met with him, and he couldn't believe that I had been turned away from so many doctors.  He said that there was something very wrong, and we would find it!  That day he diagnosed me with fibromyalgia and Raynaud's phenomenon. This obviously wasn't what was completely wrong with me, but it was a start!  YES!  I WAS SO HAPPY THAT DAY THAT I COULD BARELY STAND IT!  I had blood work done, and, of course, everything came back normal, except my platelets were clumped, but he said that it wasn't a big deal. He set me up for a tilt-table test.  He stated that it was strange because my body was acting like there was an autoimmune problem, but all of my tests came back fine.

I went to get my tilt-table test done at University of Michigan the day before we were supposed to leave. The nurse there said that everything should be fine and that I probably would test negative since people rarely tested positive for this test.  I had a really bad feeling about it.  I told my mom, and she said just to relax and that it would be fine.  I started the test, and my heart rate went straight up. Then she put in the adrenaline, and everything started to hurt.  My body was getting constantly shocked, and my blood pressure went straight up and then straight down; it hurt so badly. I lost my eyesight and kept telling her that I was going to pass out. Then I passed out!  I had to lie there for some time before I could get up again.  I tested positive for the tilt-table test and the doctor ordered me to wear a 20-day heart monitor.  She said that I may have vasovagal syncope, but there are many different kinds of syncope!

My mom and I had been planning a trip for my senior spring break to Greece through school, and no matter what, there was no way I wasn't going!! Greece was hard at times, but I took it easy and was able to enjoy everything with my mom being there!  When I got back, I started the monitor and went to school.  That day I felt awful and like electricity was going through me.  I could feel my heart rate and blood pressure shooting straight up.  I asked my friend to walk me to my car because I didn't feel good.  Walking down the hall, I hit the wall and passed out.  They called the ambulance, and I ended up in the hospital again on March 18, 2009.

For the next couple weeks I would go in and out of consciousness. I had visual disturbances (where I would only see tints of green or yellow or see everything in a 2-D form). I had a 4-week long headache, sweating so bad that my pants were soaked and nothing else, rapid heartbeat, rise and fall of blood pressure, a feeling of electricity going through my body, trouble breathing, swollen hands and feet, and pain in my legs and joints so bad that I couldn’t walk. Sometimes I didn't even have the ability to walk.  I couldn't sleep. I got really hot spots on my body, but everything around it was cold (and also turned red). I had a kidney infection. I felt shaky.  Bright lights and loud sounds hurt, and I got very dizzy and nauseous when I stood up or did anything over normal walking.  Two weeks ago, I discovered that I was allergic to the heart monitor I was wearing, so that was making my symptoms worse. 

I joined a support group called STARS-US that deals with syncope and researched several illnesses that dealt with vasovagal problems. It was clear that I had many similarities to a disorder called POTS.  I was diagnosed with Postural Orthostatic Tachycardia Syndrome in May of 2009. This was great news. Now what?

In between then and now, I've been hospitalized a couple of times for losing my ability to speak and form sentences properly and feeling like I was suffocating. I started new medications that controls my heart rate and blood pressure.  My doctor at the University of Michigan, Dr. Good, just tested me for blood amount, and it looks like I don't have enough blood in my system! From what I’ve read, having weekly transfusions could get my POTS under control!  One could only hope!

Now, I have awesome doctors at University of Michigan and Grand Rapids Cardiology who care and understand what I have.  People who are sick should be resting, and they should not have to waste their energy fighting doctors.  It seems like if doctors can't find a simple answer, they give up and tell you that you are crazy!  All you can do is fight for what you believe in and never stop until you have answers.  Everything happens for a reason; you just have to figure out what that reason is. You are your own advocate. Today is a NEW DAY!

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