I know my situation is not unique. I have over a dozen doctors, most are specialists. I've actually been "diagnosed" with dozens of things. My medical file is a foot thick. Between my insurance provider and me, we've spent six figures on countless tests and procedures, including surgical biopsies. This naturally led to a lot of "smaller" diagnoses that cover a subset of my symptoms. I really find it difficult to believe I just happen to unfortunate enough to have twenty some-odd conditions across numerous body systems that are not correlated in any way. Contrary to what my former spouse likes to say, this is not psychosomatic. I've got extensive records documenting clinically "remarkable" findings, objectively measured on expensive equipment and analyzed by real doctors.
Unfortunately, I cannot find anyone to coordinate all of the information from these pysicians and to proactively seek a unifying diagnosis. (For what it's worth, I believe this is essentially due to the economics of our health care system and medical insurance reimbursements, but that's another topic entirely). I'd love to find a real-life "Dr. House"... someone smart enough and stubborn enough to ban the term "idiopathic" from his/her vocabulary. I don't think such a person exists. I'd love to be wrong. Please prove me wrong!
I know I'm sick. I've been sick for a long time. I have a lot of different conditions/syndromes. What I need is to name my illness and prognosis. I need this for a number of reasons, not the least of which is litigation support. But also, it's very personal. I just need to put the whole process to bed. I'm exhausted from seeking a diagnosis for nearly a decade. I've been studying like a medical school student for years, so that I can take control over my own diagnosis. I've found that my medical knowledge just *****s off the doctors. They apparently don't like difficult questions from knowledgeable people.
On this site, I'd love to get some professional conjecture on the universe of potential diagnoses that explain the majority of my "conditions". Ideally, I'll find someone willing to actually help me find the real answer. I'm happy to pay for it. For what it's worth, I've been "officially diagnosed" with the following (in no particular order) ...
Gastroesophageal Reflux Disease
Chronic anemia, not iron deficiency
Chronic Obstructive Pulmonary Disease
Diffuse Interstitial Pulmonary Fibrosis
Phlebebolith Formation in Pelvic Basin
Spinous Process Fracture at C7
Lumbar Discogenic Spondylosis (Degenerative Disc Disease)
Dextrorotary Scoliosis in Lumbar Spine
Hypolordotic Cervical Spine
Retrolisthesis of L5 and Lumbar Spine
Mixed Sleep Apnea
Obstructive Sleep Apnea
Reduced Sleep Efficiency
Chronic Major Depression Partially Refractory to medication
(Possibly secondary to issues with medulla oblongata)
Dysautonomia, chronic generalized
One theory is that any one or a combination of closed head injuries and/or chlorine gas poisoning earlier in life, led to damage (or somehow de-tune) my medulla oblongata, causing an "idiopathic" autonomic neuropathy, which jacks up various body systems in an unpredictable manner. If so, I have no idea what that is called or how it is officially diagnosed. And what is my prognosis? And how does that explain everything, e.g. degernerative disk disease, or numerous chronic inflamatory processes. Some people laugh at the idea.
Can anyone here help me? Please?!!
Of course, I will answer any and all questions immediately.
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