 | |  | | Ellen took a project management approach to her health. | |  | |  |
Cushing's Disease
Cushing's Syndrome
Pituitary Adenoma
Prolactinoma
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Ellen uses UpToDate to find a diagnosis
For 25 years, Ellen struggled to find a diagnosis for the
multitude of debilitating symptoms that seemed to increase year
after year. Her symptoms included muscle cramps, intense headaches,
rapid weight gain, fatigue, edema, intolerance to heat, excessive
sweating, joint pain, tingling in her hands and feet, frequent bone
fractures, acid reflux, intense anxiety and panic attacks,
high blood pressure,
high cholesterol, high blood sugar,
sleep apnea,
menstrual irregularities, peripheral vision loss and double vision.
"I had the health problems of an 80-year-old when I was 25," said
Ellen, a 40-year-old from Palm Harbor, Florida. "It seemed like each time I had a
major crisis in my life I developed new symptoms and never fully recovered."
Ellen saw numerous specialists for her symptoms and in 1996
was diagnosed with
fibromyalgia.
However, she never felt that this was the correct diagnosis. "Although I
had some of the symptoms, my instincts told me that something else,
something more serious, was going on," she said. In 2005, at 5' 8"
and 350 pounds, and having to work hard to make it through each day,
Ellen started to think that perhaps traditional medicine would not
be able to help her. So she made dramatic changes in her lifestyle,
eating only raw foods, exercising as much as she could, and seeking
alternative medicine therapies. She saw a major improvement in what
she called "fine adjustments", but she still felt like she had
unexplained "mechanical failure".
“I had searched for years, and
never found anything like the information I found so quickly on UpToDate.”
Her new chiropractor expressed concern as well. "He said to me,
you have a lot of concerning symptoms, and a complex case; you need
someone that can look at the big picture and put the pieces together
for you." He also suggested a website she hadn't heard of before, www.medlineplus.gov that
searches medical information from a variety of reliable sources.
She takes a project management approach to her health
Motivated by her chiropractor's genuine concern, Ellen
decided that she needed to apply the skills she used at work to
become the manager of her own health. "I took a project management
approach. I started setting goals and objectives and making a
timeline for myself... It was like running my own business," she
said. "I ordered copies of my medical records, and poured over every
lab result and consultation note, making a list of questions and
terms I wasn't familiar with. Then I started researching online."
"I went to WebMD and really didn't find anything in-depth for
the complex symptoms I had," she said. "Then I went to Medline Plus,
and one keyword brought up a link to an article from UpToDate
on Cushing's disease. It sounded like it was practically written for
me. I subscribed to UpToDate so that I could read the full
article, and within minutes I knew I had found my diagnosis," she
said. "I was beside myself with joy and relief! I was careful,
though, and really looked through the information thoroughly, trying
to be as objective as possible. I didn't want to lead myself down
the wrong path. But in the end, I knew my initial excitement was
justified."
“I wouldn't have been able to
get my doctors to take me seriously if I hadn't been able to give
them the kind of information they trust. UpToDate gave me
access to that information, and the confidence to defend it.”
With information from UpToDate, she prepares for
her next doctor's appointment
Armed with her new knowledge, Ellen prepared for her next
doctor's appointment. She make a list of all the symptoms associated
with Cushing's disease, based on physician-level articles she found
on UpToDate, then marked all of the symptoms she had. "Out
of the 54 symptoms listed, I had 49 and the rest were unconfirmed
because I had never been tested," she said. "I felt so grateful to
find all the information I needed to take to my doctors. I had
searched for years, and never found anything like the information I
found so quickly on UpToDate." She read in UpToDate
about the
different treatment options
for Cushing's syndrome, talked to other patients with the condition
and learned how important it was to have a doctor with lots of
experience.
In early 2006, Ellen went back to her primary care physician
with her list of symptoms, and results from a previous blood test
which indicated that she had elevated prolactin levels. Her primary
care physician ordered an MRI to determine if Ellen had a
prolactinoma, a benign tumor of the pituitary gland that produce
prolactin, causing higher than normal blood prolactin
levels.
When her MRI results came back positive for a benign
pituitary tumor, she jumped up and down for joy. "It was strange to
be so excited about having a brain tumor," she said. "But I was so
relieved to have a diagnosis that explained my symptoms, and a clear
path to treatment."
Although initial lab tests did not confirm that she had Cushing's disease
(a condition that is difficult to diagnose),
her doctors confirmed that her symptoms were highly suggestive of Cushing's.
In addition, the tumor was identified as the cause of several of the symptoms
that interfered with her daily functioning such as blurry vision,
headaches, dizziness, weight gain, and infrequent periods.
With the assistance of the Pituitary Network Association (www.pituitary.org), a
non-profit organization with extensive resources for pituitary
patients, she researched several different clinics that offered
minimally-invasive endoscopic pituitary surgery, and ultimately
chose the Skull Base Institute at Cedars Sinai in Los Angeles. "I
sent a copy of all my tests and my MRI, and they confirmed that many
of my symptoms could be explained by the tumor, and that it was
large enough that it needed to come out," said Ellen. She requested
to be immediately scheduled and flew to L.A. for the surgery two
weeks later.
Ellen's surgery was conducted in October 2006 and was
successful. "I've seen major improvements in my health already," she
said. "The tumor is gone and has not started growing back, I'm
losing half a pound a day, my periods are normal, my cholesterol is
back to normal, my vision is fully restored, being positive comes so
much more easily now, I have so much more energy, and I should
continue to see increasing health over the next year."
Ellen now provides training and support to other patients
who have been sick for a long time without a diagnosis, showing them how to apply project management skills to their own healthcare. She also designed and provides support for
the hormones411.org website.
"I've learned to respect what a difficult job doctors have.
There's so much information out there, and each patient's situation is so unique," Ellen said.
"Now that I know just how many health problems can be explained by hormonal imbalances,
I want to help spread the word about people and organizations like UpToDate that work
hard to educate both doctors and patients."
"I'm grateful that I was able to become a project manager for my own health," Ellen said.
"However, I wouldn't have been able to get my doctors to take me seriously if I hadn't been
able to give them the kind of information they trust. UpToDate gave me access to that information, and the confidence to defend it. This type of consolidated information is invaluable."
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