When I first met Dr. Gina Nelson I thought I had finally found a doctor who was willing to learn and treat my rare condition. I was wrong. My disease can come on without any warning and I did tell her I may miss appointments because I get nervous or excited to see the doctor…thus causing an episode. I was in the Emergency Department and the doctors wanted approval from my Primary Care Physician to give me the medication I needed to abort an active episode because this episode was nonstop! The ER Doctor called Dr. Gina Nelson for approval and she told them that I missed two appointments with her office so I am no longer a patient of hers. Gina Nelson refused to approve the medication I so badly needed at the time of my episode and left me to suffer in the ER without the medications I needed to abort an active episode. I was in the middle of a non-stop month long episode that doctors could not stop. I was in so much pain and all I wanted was to sleep. I asked that they sedate me so I didn’t have to deal with the pain. Since my episode was NOT aborted correctly I was in the ER the next day vomiting acid and bile nonstop. While ACTIVELY having an episode I went to a doctor I used to see for the disease and he told me it was absolutely unethical for “Doctor” Gina Nelson to refuse approving my treatment just because I missed two appointments. He created my treatment plan in 10 minutes, signed off on it and sent me to the ER to be treated for dehydration. “Doctor” Gina Nelson doesn’t care about helping people with disease she does not understand. I also gave her a whole binder full of information about my disease, an entire copy of my medical record as well….she was still clueless about the disease and failed to provide care to a patient who was in desperate pain. I feel Gina Nelson chose the wrong field of work if she is unwilling/unable to be bothered to learn about a rare disease a patient of hers has.

My disease is not old…it’s been around since 1882, it is just so rare that hardly any doctors will treat it and there is no cure; just symptom and stress management. For me, I vomit until I throw up acid, bile, and even blood if it gets too bad. My symptoms can escalate to the point that my blood pressure goes sky high, my potassium levels drop so low it’s possible to go into cardiac arrest and I am in excruciating abdominal pain. I have been tested for everything under the sun…every doctor I try to see for symptom management and diet outlines they look at me as if I am making this disease up ….so much to the point I am explaining to the doctor what the disease is, how long it’s been around, the physiology of it, what causes it, and what the symptoms are…..I am consistently educating medical doctors who should be doing their own research on the disease…..especially if you are treating a patient with the disease.