My PCP has officially diagnosed me as a “bonafide medical mystery.” Every disease, disorder, condition or syndrome I have seems to be something not covered in basic medical school classes. All of my life I have had to deal with docs that respond to my requests for help with silence, a couple of blinks, followed by a deer-in-the-headlights stare. I have had to do my own medical research, since I was 18 yrs old, to be properly diagnosed. I don’t know what is more weird – my bizarre body or the fact I have been doing the job of most of my doctors for decades…your thoughts?
-At age 11, I found a lump behind my ear. My mom thought it was some bug that had imbedded itself under my skin during one of my many forays into the great outdoors. Three docs came examined the mystery lump. The first one told me right away, “it’s a cancer – we need to remove it.” The second one had no comment. The third laughed at the the first doc, and proclaimed that it was “just a misplaced lymph node,” and it would swell and recede as all my other lymph nodes did in response to allergies, colds, etc., and it has done so for the last 35+ years.
Thus began the list of my weirdo diagnoses…
– ulcers at age 12 (“impossible!” declared the radiologist that performed my upper GI. I guess not.)
– a “biological false positive” RPR at age 18, discovered only after a kind doctor thought enough to question the initial positive test result and took the time to talk to me, unlike the first doc that told me I had syphillis!! (Through my own research, I learned this false positive is an indicator of autoimmune disorders. This was pre-Internet too, I used BOOKS and JOURNALS!)
– a large ovarian cyst that was made worse by the fact my intestines were wrapped around it. For 2 years, I was told it was constipation, an ectopic pregnancy, and then a hernia. I knew rhere was something very wrong and finally sought a second opinion. Surgery was planned ASAP – to remove a dermoid cyst surrounded by a dangerously thin sac containing 300cc of fluid.
-symptoms of my nonspecific autoimmune disorder (formerly known as lupus) were classified for YEARS as gastritis, allergies, depression/anxiety disorders (I was told on more than one occasion I was making up the symptoms for attention!) until the doctor I was working for at the time put the pieces together and sent me off to the lab for a series of tests that proved I had some form of autoimmune weirdness. I had been vindicated! These test results were my proof that SOMETHING was wrong – and that I had better be taken seriously by medical professional from now on. Or so I thought…this issue is still causing problems for me.
But wait, more weirdness abounds! After 5 surgeries and countless steroid injections for an alleged spinal nerve root problem, caused by what I was told was a ruptured annulus from my 1997 car accident, I sought yet another opinion – from probably my 10th doctor. I knew, based on my knowledge of anatomy and from MY experience with MY pain, that I did NOT have a problem with any spinal nerve. The majority of doctors don’t think beyond the spine which result in many people, just like me, having unnecessary spinal back surgeries. (Check out my 10/9/2012 blog post about new diagnostic recommendations issued by The American College of Radiology in October 2012. Not a single mention of a non-spinal origin of pain was mentioned!) This doctor ordered an MRN, and after successfully arguing with insurance to cover the procedure (since it is just an MRI that is tweaked to image nerves, and is used worldwide as a standard of care for diagnosing peripheral nerve disorders), and I travelled to CA to have the scan. The study revealed that the source of my insidious back and leg pain was due to a genetic anomaly of my sciatic nerve and my piraformis muscle (a relatively rare event). This was surgically corrected by a brilliant neurosurgeon. He also found that several other nerves were involved in the jumble created by the anomaly and accident kinematics, thus correcting a problem I had developed with urinating. A urogyneocologist had told me this was because I had a “defective bladder” and that I must choose between an implanted electronic stimulator(!) or learning how to cath myself so I could pee regularly. Once again, had I not done my own extensive research, think of what I would have had to live with – and the unnecessary damage that would have been done to my body. It sickens me.
It doesn’t end there.
-I had extraneous breast tissue removed that grew UNDER both of my arms (accessory axillary breast tissue, which I was wrongfully told for years was swollen lymph nodes due to underarm shaving. The surgeon I finally saw had seen this condition before – something he told me is only seen in about 2-6% of the population. My PCP have never heard of the condition.
-A few years ago, my breasts suddenly and PAINFULLY grew 5 bra sizes. My skin became oily and my hair started falling out. Since I had my uterus removed in 2007 (yet another folly of misdiagnoses, until I found a doc that solved the problem by taking the infernal thing out!), I had no idea how this issue may have been effecting my periods. Traditional docs don’t run complete hormone profiles, so I was left to languish with the pain and awkwardness, once again, undiagnosed. I independently sought an opinion from an endocrinologist, and tests showed a bizarre (of course) smattering of results, indicating elevated prolactin levels and the potential for Addison’s disease. I was sent for a brain MRI, and a pituitary tumor (!) was found. I was also sent to two different surgeons for breast reduction consults, which then led to a breast ultrasound, and lo and behold – a benign tumor was found! Yes, these things were discovered – but the point is, had I not done my research and gone to see additional doctors on my on, neither abnormal growth would have been discovered. The shocking thing was the possible cause of all this – the medication I had been on for years for my back problems! Usually, men have the hormonal issue with pain medications. Nope, I have to be the oddball, the weirdo, the one that suffers from an issue I once again had to identify on my own. The cause was confirmed by a doctor at Brigham & Women’s hospital, who just happens to be conducting a research study on this very issue – but for men only.
-This past month, I was diagnosed with Autonomic Orthostatic Hypotension. Of course, this was after several ER and doctor visits at which I was, once again, wrongfully diagnosed. I was told I was either dehydrated or having anxiety-mediated syncope. Nope. Turns out that I don’t have simple AOH, if there is such a thing. I have deathly low blood pressures during the day, and uncomfortably high bloods pressures at night. I cannot take the only 2 medications approved for AOH due to this problem. I am currently on the waiting list to see THE specialist in autonomic disorders. Until then, I am pretty much confined to my home, unable to go out without a companion, should I suddenly pass out. Again, had I not done my research, I would not have had the knowledge to advocate for better care for this strange condition – and I learned of a orphan drug that just may help me, along with several other alternatives – not what my doctor had told me at all.
Weird enough for you????