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The first time I went to a doctor to try to determine what was causing my pain and fatigue, I was 14. The doctor identified my mitral valve prolapse but, other than that, he deemed me to have been perfectly healthy. I didn’t aggressively pursue a diagnosis, I just knew my neck and back hurt a lot.
In my 20’s, I began to show symptoms of vitiligo. Treatment for it gave me severe burns so I discontinued treatment. I then followed a friend’s recommendation to see a prominent doctor recommended in Washingtonian magazine. Being the fibromyalgia doctor, he diagnosed me with fibromyalgia and chronic fatigue syndrome. At my request, he ordered imaging of my neck but never referred me to a neurosurgeon. My fibromyalgia and chronic fatigue syndrome misdiagnoses followed me to my new doctor in my new city who prescribed increasingly high doses of Cymbalta, which caused liver failure.
I tapered off Cymbalta and stopped seeing that doctor. Over the years, very infrequently but particularly when I traveled, my stomach would bloat to the point it felt like it would explode. I never understood why. After the liver failure, I developed chronic gastritis and GERD which caused Barrett’s esophagus. I’d already had a myomectomy to remove uterine fibroids 10 years ago. My gynecologist panicked when she saw how many large fibroids I had in addition to knowing I had endometriosis and cystic ovaries. I found a less anxious gynecologist to do a complete hysterectomy (including ovaries) via laparoscopic surgery. I knew from the pelvic exams and ultrasound it wouldn’t be an easy surgery.
I then developed gall stones that my gastroenterologist ignored, despite telling him repeatedly I had the sensation of a water balloon rolling around in my upper quadrant. After a colonoscopy and endoscopy, I finally decided to take myself to the ER where they did a CT scan and told me my gallbladder was so full of stones it might burst. I had an emergency cholecystectomy the next day.
But, the early satiety that I’d experienced for a year or two, and nausea and vomiting all night long anytime I ate more than a few bites, continued. My gastroenterologist ordered a gastric emptying study, which showed nothing. But, then, I had yet another gastroparesis attack that was so bad, and my blood volume got so low, that I passed out. For the first time, I went to the ER, where the ER doc documented my projectile vomiting, despite an IV delivering Zofran. It was seemingly relentless.
I saw yet another neurologist (4th or 5th one). The first had told me I had a fear of flying. This one diagnosed somatoform disorder. Then, through my family, I found neurologist Robert Gerwin MD. He ordered an upright flex/extension MRI and rotational CT scan of my cervical spine, and MRIs of my thoracic and lumbar spine, and referred me to neurosurgeon Faheem Sandhu MD. The radiology report was no different than the one a neurosurgeon I’d seen a few years before had gotten. But, Dr. Sandhu looked at the MRIs and immediately scheduled me for a C-4-5-6 ACDF.
Meanwhile, I’d been tentatively diagnosed with hypermobile EDS (hEDS) by Dr. Fong at the University of Rochester Medical Center, while my name sat on the waiting list to see EDS expert geneticist/internist Clair Francomano MD. 2-3 years later, I finally got my first appointment with Dr. Francomano who ordered genetic testing. The results were variances of uncertain significance for vascular and arthochalasia types of EDS.
Dr. Francomano provided a stack of recommendations, orders and x-rays to help increase my ability to function and manage my pain. Since then, I’ve had one follow-up visit but was unable to get the care she recommended in Rochester, NY.
So now, after many years of trying, I’ve found a place to live in Greenbelt, MD, while keeping a place to live and work in Rochester. So I can access the EDS-knowledgeable care that’s available in the DC/Baltimore area. A few months before I closed on my tiny unit in Greenbelt, Dr. Francomano moved from GBMC in Baltimore, MD to the University of Indiana. I’ve not yet decided how I’m getting there.
In April, I’ll be driving to Bloomington or flying to Indianapolis to see Dr. Francomano. It only took 44 years to get an official diagnosis. I’ll soon be 61 and am very grateful to be able to finally access EDS-knowledgeable PTs and OTs, as well as other doctors, besides Dr. Sandhu and Dr. Francomano, for the first time in my life.
Now, finally, I can act on those recommendations from Dr. Francomano. Meanwhile, for the last several years, I’ve been providing psychotherapy and pro bono support/guidance and started an EDS Support Group in Rochester.Tags: Chronic Fatigue, Diagnosis Journey, Ehlers-Danlos syndrome, Support System
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