In September 2008, I was seeing my fourth ankle specialist of the year to try to find out why my ankle was hurting for several months in a row, Dr. Osep E. Armagan asks me to bend over and touch my toes. He sees that I am very flexible, and asked me to demonstrate other joint extensibility. When he saw how far my kneecaps moved, wrists bend, that my shoulders can dislocate and relocate easily, and how lax my fingers are, he told me he suspects I have Ehlers Danlos Syndrome.
I began my quest to receive a confirmation of this diagnosis. I called my primary care doctor and asked for a referral to a specialist (either a rheumatologist or geneticist) to determine whether I have the syndrome. I was told they would request a referral and to wait for it in the mail. While waiting, I spent some time every day researching the syndrome online; it appeared to me that I had the symptoms of Hypermobility (formerly called Type 3).
After two weeks of waiting for the referral, I began leaving messages at my doctor’s office, for the medical assistant, and for the office manager. After two weeks of leaving messages asking after my referral and receiving no response, I called my insurance company who put me in touch with the medical assistant. She said that she does not know what Ehlers Danlos Syndrome is, and therefore did not know what to do with the request.
I asked why she never called me back, and she said she did not call because she did not understand the syndrome. Flabbergasted as to why she would not call a patient to find out why he is leaving her so many messages, I explained the basics, and asked for a referral.
Two weeks later, I called the insurance company who looked it up for me; the referral was declined as “not medically necessary.” I continued calling and asking for referrals, and was put off and declined for months.
In February 2009, I started feeling pain in a spot on my back. I had received surgery in the middle of 2008 to remove some abnormal tissue, and a second “deep” surgery to remove more tissue. The surgery site hurt more every day. I had a physical and mentioned it to the doctor, who told me it was merely scar tissue. During another visit weeks later, I showed him again and he again said it is only discomfort from scar tissue, and the stitches are coming apart, and not to worry.
As weeks go by, the pain increases. I call the doctor’s office and ask what to do, and they tell me I should see the dermatologist who originally did the surgery. They tell me they will put in a referral request. Two weeks go by with no response, so I call several times and leave messages. I receive no response, so call the insurance company who looks up the referral request: Declined due to patient request for referral.
Upon investigation, the insurance company told me that the doctor’s office knew when they put in the referral request that the review board would decline it. The doctor’s office phrased it in such a way that made the decline expected; they got me declined on purpose? I asked the insurance company why the doctor’s office would do that, and why they will not ever call me back. They tell me “the doctor’s office has to run itself like a business. Therefore, they have to choose who to call back, and who to go to bat for on referrals. I know it sounds crass, but that is the reality of the situation.”
Therefore, I began the painful process of changing medical groups. With a new medical group and a new primary doctor, I go and present my history and suspicion that I have Ehlers Danlos Syndrome. “I would like a referral to either a rheumatologist or a geneticist so that they can confirm this diagnosis.” Instead, he refers me to a dermatologist to look at the surgery site on my back.
When I see the dermatologist, he recognizes that I have Ehlers Danlos Syndrome in mere moments. The feel of the skin, the laxity of the finger joints, the extensibility of the wrists and knees, the multiple problems with the eyes, and the atrophic formation of the scar tissue on my surgery site all clue him in. On May 7, 2009, Dr. Milton Kaplan writes me a referral to a rheumatologist, something I have been seeking since September 2008!
When I got the referral in the mail, it was for a doctor with a horrible doctor history. Cesars Sinai fired this doctor for a multitude of issues involving patient care, misdiagnosis, misrepresentation of patient health to insurance companies, etc. I called the medical group and asked for a different doctor. Next, the medical group assigned me to the Director of Rheumatology at Cesars Sinai, Michael H. Weisman, MD, however he had no opening for over a month, so I made an appointment with another rheumatologist at Cedars-Sinai, Mariko L. Ishimori, MD.
I had my appointment on June 11, 2009. I found Dr. Ishimori amazingly pleasant, attentive, and intelligent, even for a doctor. She used terminology I was comfortable with and explained things well. During our 45-minute session, she brought in Dr. Weisman (the Director of Rheumatology) to consult. They agree 100% that I have Ehlers Danlos Syndrome, Hypermobility Type. There is a possibility that I also have another type of Ehlers Danlos Syndrome as well, which also exhibits hypermobile or hyperextensible limbs. One test was run on 6/11, a Vitamin D panel. She also recommended I get a Dexa Bone Density Scan to find out my bone density. If both are low, it might indicate I have another type, and further testing is necessary.
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