Sunday, December 7, 2008

'The girl who couldn't wake up'-- 5 years of misdiagnosis

"For five years, beginning in 1999 at age 16, Jenkins complained of fatigue, nausea, dizziness, memory loss and severe headaches. She frequently fainted. All she wanted to do was sleep."

A must-read article, 'The girl who couldn't wake up', details the events after Jennifer Julian Jenkins was in a wreck which caused the pituitary to be separated from its stalk (infundibulum). She was misdiagnosed and mistreated for 5 long years.
In addition to the flu, Jenkins was diagnosed with anemia, gastroenteritis and a viral infection. A psychiatrist said there was nothing medically wrong with Jenkins, she was depressed and lazy...

..."At one point, my parents talked about putting me in a mental institution because no matter how hard they tried, nobody could find anything wrong. And the thought of being institutionalized really didn't bother me. All I could think about was, 'At least there, I could sleep without anyone disturbing me.' "

Once a doctor took the time to do two simple tests for cortisol and thyroid, the problem became clear: hypopituitarism. When asked why it took so long for doctors to test and treat her appropriately, Jennifer says, "I hope some of the doctors I saw read this. I hope they slow down, listen to their patients a little more and take the time to figure out what is wrong instead of just chalking everything up to age or depression."

To read more, click here. A sound bite is included.

Jennifer's story will air on Discovery Health's Mystery Diagnosis December 15. Check your local listings for the time.

UPDATE:  The story isn't at the link anymore, but here it is from the Clarion Ledger in full:

Charlie Julian raced up the stairs of the family's Brandon home and into his sister's bedroom, where he found her asleep and unresponsive.

He yelled for her to wake up and gently, but firmly, slapped her face.

"That's when I would just burst out laughing," says Jennifer Julian Jenkins, 25, recalling a day last May when she and her brother reenacted a real-life scene for The Discovery Channel's Mystery Diagnosis series, which will air Dec. 15. "We must've tried it a dozen times and every time he would slap me, I couldn't keep from laughing.

"They finally said, 'Let's just skip the slapping part.' "

It wasn't a laughing matter four years earlier. After being rushed to the hospital, Jenkins' body temperature was a frigid 94.3, her blood pressure a dangerously low 76/61.

Numerous tests were conducted. The best guess doctors could offer: Jenkins was suffering from a severe case of the flu.

For five years, beginning in 1999 at age 16, Jenkins complained of fatigue, nausea, dizziness, memory loss and severe headaches. She frequently fainted. All she wanted to do was sleep.

And she went back in time. Instead of going out with her friends from Brandon High School, Jenkins was content to stay home and play with Barbie dolls.

In addition to the flu, Jenkins was diagnosed with anemia, gastroenteritis and a viral infection. A psychiatrist said there was nothing medically wrong with Jenkins, she was depressed and lazy.

"And I began to believe them," Jenkins says. "To me, I had become this awful, worthless person.
"At one point, my parents talked about putting me in a mental institution because no matter how hard they tried, nobody could find anything wrong. And the thought of being institutionalized really didn't bother me. All I could think about was, 'At least there, I could sleep without anyone disturbing me.' "

Finally in March 2004, after visiting more than 20 specialists and nearly losing her life, two Jackson physicians - Albert Steele and Robert Evans - correctly pinpointed Jenkins' problem. Jenkins was suffering from hypopituitarism. In plain terms, her pituitary gland - located at the base of the brain - had stopped supplying her body with sufficient amounts of hormones.

"For five years, we watched our daughter become someone we barely recognized," says her mother, Marilyn Julian. "And I was treated by most doctors as some micro-managing mother who needed to get out of the way and quit bringing her to see them."
On June 7, 1999, Jenkins and her mother were driving home from Columbia after visiting Jenkins' grandmother, who was battling cancer.

Jenkins was driving her mother's new Honda Accord and traveling the speed limit, 65 miles per hour, along U.S. 49 when a car pulled from the shoulder of the median into Jenkins' path.

Upon impact, both cars began to spin. The driver's side of the Honda was struck twice by the other car. Jenkins was knocked unconscious. Her mother suffered two broken ribs. The other driver, a teenage boy in his aunt's car, was not injured.

Jenkins opened her eyes shortly after the ambulance arrived. "I remember hearing my mother screaming for me to wake up, and I had a lot of pain in my neck," she says.

They were treated and released from Simpson General Hospital in Mendenhall. Jenkins and her mother were sore for several weeks but appeared to recover with no complications.

Four months later, Jenkins had her first fainting spell. Jenkins' pediatrician ordered tests of her brain and heart. "When the results came back, the doctor didn't seem too concerned," she says.

Her frustrating medical journey had begun.

A month later, the day before Thanksgiving, Jenkins appeared to be having a stroke. Her speech was slurred. Her mouth drooped on one side. She was admitted to the University of Mississippi Medical Center in Jackson and diagnosed with complex migraines.

"I'd have at least one migraine every month," Jenkins says. "They would put me out for a day or two."
"If Jennifer got a cold, it turned into a major ordeal," Marilyn says. "If she got a stomach bug, she would have to be hospitalized for it. I work at Brandon High School (as choral director and a health teacher). I'm around teenagers all the time. Stomach bugs usually don't put them in the hospital."

Jenkins says her senior year "is a blur ... I see the pictures of my graduation, but I really don't remember it."
Her grades slipped. When she took the ACT again, hoping to improve on the 21 she made as a sophomore, she scored an 18.
She flunked out of Belhaven College her freshman year "because I couldn't stay awake long enough to go to class.
"And my parents didn't know what to think. So we had a big pow-wow. You know, 'You've got to do better. You're sleeping your life away.' But in their defense, they had tried everything and I couldn't even keep a job."

She was so fatigued, Jenkins went into one of the dressing rooms at a department store where she worked and went to sleep. When co-workers came banging on the door, she tried to disguise her voice, hoping they would go away and let her rest.

"Jennifer told me recently that she would tell us anything we wanted to hear back then so we would leave her alone and let her sleep," Marilyn says. "I think about it now, what it must have been like for her."
It was Feb. 16, 2004, when Charlie found his sister near death in her bedroom.

"I had an Algebra test that day (at Hinds Community College) and my mom kept calling me, making sure I was awake," Jenkins recalls. "After the third time, I just quit answering."

Marilyn sent Charlie over to check on her.

"I think we all wonder what would have happened if Charlie hadn't been home studying for the Bar exam," Jenkins says.
On a whim, Jenkins' dad - Charles Julian - made an appointment for her to see his internal medicine specialist, Albert Steele.

"Dr. Steele listened to what had been going on, and then he started taking my vitals," she says. "When he took my blood pressure, it basically didn't register. He said, 'I don't see how you're even standing right now.' "

Tests revealed her cortisol level was critically low. Steele referred Jenkins to Robert Evans, an endocrinologist, who discovered Jenkins' thyroid level was low.

"He said, 'I think I know what it is - hypopituitarism - and I'm going to put you on some medicine (Cortef, a steroid, and Levoxyl, which increases one's thyroid level),' " Jenkins recalls. "He told me if that's what it was, I would feel better within 24 to 48 hours."

The next day, Jenkins came running down the stairs, into her parents bedroom and jumped onto the bed.
"That was one of the biggest miracles of our lives," Marilyn says. "She said, 'I realize I'm not a lazy bum, that I've actually been sick this whole time!' My husband and I just sat there in shock."
Jenkins is now married to a lawyer, Jacob, and works as a cardiac nurse at St. Dominic Hospital in Jackson.
And she recently tossed the doctors another curve: Jenkins found out three weeks ago she is pregnant.
"I was totally flabbergasted when I heard that," Evans says. "I just didn't think there was any way, because of the (hormonal) problems she had been through, that Jennifer could conceive a child."

So why did Jenkins and her family have to go through 20-something doctors and thousands of dollars before finding two physicians who diagnosed the problem almost immediately?

"Her symptoms were pretty dramatic, but Jennifer was a teenage girl who looked otherwise healthy," says Evans, who has been practicing for 24 years. "It's pretty easy for a doctor to say, 'She's 17. Weak. Dizzy. Give her a little time until she grows up, and it'll go away.'

"And hypopituitarism is not something you see a lot in adolescents. It's usually found in older adults. I give Dr. Steele a lot of credit for testing her cortisol level. And I'm just happy I was able to discover the thyroid problem and prescribe the correct medicine."

Credit also goes to one more physician: Lewis Blevins, a pituitary specialist at Vanderbilt Medical Center in Nashville.
"Dr. Blevins was the first one to connect the car wreck with the pituitary problem, even though my husband and I always suspected it," Marilyn says.

"The pituitary gland is like a cherry on a stalk," Jenkins says. "Dr. Blevins believes the impact during the accident tore the stalk and prevented the pituitary gland from doing its job."
Jenkins takes a daily dose of Dexamethosone and Levoxyl to stimulate her adrenal glands and increase her thyroid levels.

Two tablets every 24 hours and life is great again.

"I hope some of the doctors I saw read this," Jennifer says. "I hope they slow down, listen to their patients a little more and take the time to figure out what is wrong instead of just chalking everything up to age or depression."


  1. OMG, that just makes me want to cry. Poor Jennifer. :(

  2. I wonder how much chronic fatigue is actually due to this?

  3. It's easier for many doctors to take the easy way out and say someone is lazy or depressed. I was watching and said I bet something happened in her brain due to the impact - and I'm an admin assistant! Look harder doctors and listen to your patients. Poor girl.

  4. Jennifer,

    How do I find your story on Mystery Diagnosis. My brother has been suffering from symptoms such as yours for years and I'd like to see the episode and learn about the exact tests that lead to your diagnosis.

  5. Hi. Jennifer doesn't post/write here, but I will try to find out for you.


  6. Hi Jennifer,

    First off, thank you for sharing your experience. You saved my life with your story and there's no amount of words that could express how greatful I am.
    I had been going to doctor after doctor with the same horrible symptoms as you experienced. I have been diagnosed with MS, Fibromyalga, depression,and Narcolepsy. At one time the doctors claimed the symptoms were caused by fibroid tumors in my uterus so they preformed a complete hystorectomy when I was only 27. After that didn't resolve my symptoms, the doctors blamed my saline breast implants, claiming the casing was poisening my body. So, at the age of 29 I had to have almost all of both breast removed. I now look as though I've had a mystectomy and still it didn't fix the symptoms.
    After their mind boggling ideas failed, they of course due to my age, claimed I was extremly depressed. Even after I told them I was not depressed by any stretch, I was handed a referral to a psych and lots of depression medications.
    I had given up and had come to the conclusion that I was destin to live to one day not wake up. I have two young daughters who I could no longer be a mother to and it broke my heart to think they were going to lose me soon.
    I could feel myself getting sicker. I was unable to awake even to care for my girls. My husband is a Naval Firefighter so I live like a single mother 90% of the time with him away. I felt like there was no light for me anymore. I couldn't understand what I did to deserve my doctors giving up on me. Couldn't they see after me being willing to allow them to mutilate my body, that I just wanted to feel better no matter the cost??? I was convinced I was just going to die and my daughters were going to find me one morning. It wouldn't be until they did the autopsy that everyone would finally see that I wasn't crazy..

    That was until...One evening, my husband and I had just returned from another pointless Doctor's appointment. I had been in tears from distress most of the day and then we came across your episode..
    It was like you were my angel and God had sent you to help me. You save my life! I called my Doctor the next day and even though she inital refused, I insisted that I wasn't leaving until she ran the blood test's that I was requesting. The very next day I recieved a panic phone call from their office stating I needed to go to the hospital immediately! My levels were Panic critially low and my body was begining to shut down.

    We're still figuring out the proper treatment (it's been 2months) but I already feel a bit better.

    My husband, two girls and I want to thank you!

    Because of you, my two daughters have their mother back and I plan to be around for a very long time!

    Your an Angel Jennifer

    lots of love~ Brooke

  7. Hi, Brooke. I'm the person who writes on this blog, but Jennifer was the person in the story. I will try to get in touch with her so she can see this. I am so glad you saw it. Lots of hugs.


  8. Angels find us bless us and keep us safe in thier arms..and we get by with a little help from each of our friends and people like you who take the time to care and share, making the world a better place.You help my mama so many days and nights

  9. God bless each and everyone of you, I have cushings and acromegaly so I know how you feel...the isolation and hopelessness is overwhelming.....I am you and you are me...I feel like sickness joins us as one..I have cried thousands of tears for all of us with sickness and I will continue to be a prayer warrior for all of you. God bless, Tisha Kreutzer Barela



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