On the Way to a Diagnosis

Prior to May of 2016 I was physically fit and healthy. I worked out four or five times a week at least an hour per session. Life was good, until I woke up one morning with sudden muscle atrophy in my upper left glute.

The top half of my ass sunk in to the bone; approximately the size of half an onion. The trips to the doctors began, as I saw shock and fear in some of their eyes. The first physician had no bedside manners in brutally stating his opinion that "there was nothing wrong with me", even though I had some type of trauma happen paired with excruciating pain. I was out of town for work so I called the clinic I visited back the following day requesting to see the head physician. I arrived at the clinic and the nurses promptly took me back to a room. A tall gentleman in a white lab coat came in, speaking eloquently with concern about my prior visit. Using the utmost care he examined the atrophy, had me do a few balance tests, checked my reflexes, then proceeded to look at me with a bit of heartbreak. Explaining what he thought to be some neurological disorder, which I was told to get home as soon as possible to see a Neurologist.

I did blood tests for everything imaginable including cancers, sat through CT scans, x-rays, everything that was asked of me. I went through three Neurologists, one of which told me that there was nothing wrong with me and this was my new way of life. Along with visiting a G.I. Specialist, Oncologist, Chiropractor, Dermatologist; thirteen doctors to be exact in varying fields yet no one had an answer. I begged to go to a Geneticist; for what I paid in some of the double tests the condescending Neurologist made me do I could have paid for the Geneticist, yet every time I asked I was laughed at being told that is not what I needed. Had I been referred I would have had an answer five months before I finally came upon an amazingly brilliant man on my own.

Through research and talking to others I realized that I may have P.O.T.s, Postural Orthostatic Tachycardia syndrome, little did I know it was a combined condition. Most of my symptoms fit; nauseous, fatigue, random pain, problems going to the bathroom, headaches that would knock me to the ground, lightheadedness, dizzy as if I were drunk, could barely enjoy life with mobility, and an increased heart rate. Upon seeing the Cardiologist I realized he did not think I was crazy or attention seeking! He believed me that there was legitimate pain occurring, possibly leading to an underlying problem. The array of tests he subjected me to were the kind you see trained athletes perform, including a few ultrasound tests looking for specific things in my body. I was finally validated when the last step in being diagnosed was going to a Geneticist. The conclusion to my testing was that not only did I have P.O.T.s, but I also had E.D.S., Ehlers-Danlos Syndrome.

The more I learned about these two conditions it explained many of the things that happened to me as I was growing up. These occurrences were not something I did or did not do, they were my body reacting to a genetic condition I had no knowledge of. So few doctors actually know of this condition that people who are later diagnosed tell the doctor "they felt as if they were going insane, because they could feel their body attacking itself yet all the 'professionals' wrote it off as if they wanted attention".

The Cardiologist put me on some medicine to balance out my triggers and my rapid heart rate of course, but also asked me to adhere to a special diet. This diet consisted of 2 tablespoons of salt, 100 ounces of water, and 80 grams of protein a day. Which led to me discovering the Keto diet, or rather way of eating.