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Blog: Dude, Where’s My Diagnosis?

Updated 15th April, 2015

This was originally published on my personal website in 2013. At the time I had written this, I was early in my pregnancy with my son (who is at the date of this writing 16 months old). I had gone on a Gluten Free diet in January of 2012 and saw a reduction in brain fog and pain. I eventually came off all my pain medications and Valproate (Depakote) for seizures. I still had myoclonus and pain, among other symptoms but things actually seemed to improve. I had talked myself into believing I was “cured” after many years of waxing/waning health issues that I had never gotten an explanation for. However, to my shock and dismay, I found symptoms were there all along and some intensified during pregnancy though I didn’t notice because everything gets blamed on pregnancy! Eventually things took a turn in late July of 2014 and eventually lead to the creation of this website.


The topics below are not a completely accurate depiction of my personal health current status but at the time during my pregnancy, I was hopeful. In any event, on to the post …

Disclaimer: I am not a doctor. I have no medical training at all. I am only a disgruntled consumer who sees a lot of baffling things as they relate to healthcare and the treatment patients receive. As always, address any personal concerns you may have about your health or healthcare with your own healthcare provider. 


Primary Point of Contact


Since moving to the UK, I have been on an obsessive mission to obtain as much of my adult medical history from the US as possible. So far, so good.


But it reminds me of how many difficulties I had with US medical care and how often I was left feeling like doctors either thought I was nuts or I thought I actually was nuts. When I read over the studies that were done and think about the symptoms that I have suffered with for many years now, I’m highly annoyed that discoveries were made and then not disclosed to me or in cases, to my Primary Care Physician (PCP) and thus have led to several more years incurred healthcare costs, pain and discomfort and time wasted in general.


In my opinion, not an efficient use of time and money on anyone’s part.


A recent analysis published in BMJ Quality and Safety examined malpractice claims over 25 years, identifying more than 100,000 cases that involved diagnostic error, with an average price of $386,849 per claim. An earlier study published in the same journal estimated that diagnostic errors account for 40,000 to 80,000 hospital deaths yearly in the U.S.

– Paul Cerrato for Healthcare Finance News


The common model for healthcare as we know it is basically the PCP as the “entry level” contact into the healthcare system as indicated in this article by the AAFP. The Primary Care Practice is available to patients to  1) promote health 2) prevent disease 3) educate, diagnose and treat. Your PCP is in a position to be your primary contact in your healthcare experience and is defined by AAFP as:


primary care physician is a generalist physician who provides definitive care to the undifferentiated patient at the point of first contact and takes continuing responsibility for providing the patient’s care. Such a physician must be specifically trained to provide primary care services.



From this point of contact, you may be referred out to other specialists, for example a Cardiologist if you’re experiencing chest pain, etc. These, as I call them, “satellite specialists” then share their findings with your doctor.  However, the problem as I see it occurs when other specialists you may be seeing for existing conditions are not sharing their total findings or your PCP is not correlating these findings to anything else that may be persisting with the patient. We may see the patient given the responsibility of collecting and providing prior copies of studies or tests for clinical comparison when they can’t be obtained from the PCP or prior Doctors/Specialists.


I know this bit myself as I have had a few specialists ask me for copies of films, studies, reports, tests, etc. so that they could make a comparison with their recent results. This has happened because they couldn’t obtain from the PCP who would claim she did not have the results or they would say they weren’t able to obtain them from the facility, etc. I also often found that if they did not ask me, they just left it and the final notes would say something to the effect of  “no prior” meaning they either thought there were no prior results or they just assumed this was the first test of this type.


To me, this area specifically causes a huge break down in the communication system. Ideally, the PCP should have the results of tests that they themselves ordered or were ordered by a Doctor or Specialist with whom they are working on a diagnosis. Again, this is an “ideal” situation. Sadly, I have frequently experienced personally other healthcare professionals ordering tests, performing them and then not sharing aspects of the results with the PCP. I’ll give you an example.


“We have a failure to communicate.”

(Or More Than You Wanted to Know About My Bowels)


Years ago (many years before “the grapefruit” aka fibroid), I started having severe abdominal pains. I went to the ER one early morning and had a fever and high blood pressure. There was tenderness to the abdomen. They did an x-ray and said they didn’t see anything so they gave me Vicodin and send me home.


Over time, the pain, while not as severe, continued to persist resulting in another trip to the ER after two days of excessive rectal bleeding (pints of blood). Again, high blood pressure, slight fever and terrible abdominal pain but they sent me home. I went to the Mayo Clinic and reported the large amounts of blood and they did a sigmoid scope and found several ulcerations in the sigmoid colon (I don’t know what else they may have found, don’t have their records yet). They told me I had GERD, told me to take Prevacid and that was it. I eventually saw other Specialists and had a few ideas such as Irritable Bowel Syndrome (though I don’t fit the criteria). I was having severe issues right before my husband and I got married and again, went to Urgent Care with fever, severe abdominal pain, tenderness, etc. and was referred to a specialist who did a functional exam (x-rays) and concluded that while severely constipated (suggested a trip to the hospital if it didn’t abate soon) and that maybe I just had a “slow bowel”.


For a “slow bowel”, I’ve had a lot of GI symptoms which include a lot of blood from the rectum. That’s just not right. You should never bleed pints of blood from your butt! If you do, I would say there is a problem. But after all the wacky symptoms, multiple suggestions and multiple tests from multiple specialists, I decided going Gluten Free was my best bet. I have been but I still have persistent GI problems that no amount of gluten exclusion has helped.


WTH Is This?


Then today, I got in the mail an envelope of test results from a medical facility in Phoenix. The envelope included tests ordered by three different sources, my PCP, my OBGYN and my Neurologist. When looking at two of the tests, on a spinal MRI and the other a pelvic MRI, I was … not really “shocked” but annoyed that there were items I didn’t know about. Namely, the pelvic MRI showed six abnormalities including Sigmoid Diverticula, degenerative disc disease and bilateral symmetric hip join effusion.


WTF is this stuff? Nobody told me anything about this?!


My OBGYN obviously did not go over these other items with me, either assuming I already knew and my PCP was already consulting on these items, assuming since it didn’t affect the fibroid issue it wasn’t important to mention or just did not share with my PCP so nothing was ever addressed. I’d like to say this is the first time I have read test results (yeah like that biopsy that was incredibly painful and “insufficient”) and been annoyed to find out that potential abnormalities existed that might explain these symptoms that people are telling me I’m crazy for having!!  But, you know, the thing that sticks out on this report is Sigmoid Diverticula.


Let’s back-track to the part where I said I’ve suffered abdominal painpersistent painful gas, chronic constipation and episodes of fevertendernesshigh blood pressure and loss of blood via the rectum over perhaps the last ten years.


I would like to think that in 2009 when the MRI picked up the presence of sigmoid diverticula, my OBGYN might have sent the results to my PCP or indicated to me I might discuss with my PCP and have another colonoscopy. But that never happened (and I can say this because I have a complete copy of my PCP records including results sent to my PCP). Since 2009, I’ve had persistent pain, complained persistently about it and have seen additional specialists and had additional tests, all of which resulted in me looking insane. I can only speculate as to why this report wasn’t shared with my PCP, not even a note saying she ordered the MRI and while the additional findings didn’t relate to the fibroid and upcoming surgery, it might bear to note if I complained of symptoms from the sigmoid diverticula, which I had for years with the abdominal pain, bloating, gas, chronic constipation, rectal bleeding, etc.




That’s just my beef about what has happened to me. I can understand it might work better with other PCPs, other Specialists and other patients. Doesn’t mean that it doesn’t happen. Doesn’t mean most people don’t have a great experience. Doesn’t mean lives aren’t saved daily and quality of life isn’t increased for a lot of people.


I just haven’t seen that happen to the good people I know.  Over ten years, I have talked to several chronically ill people with a variety of symptoms and I have heard that same types of responses. I’ve heard repeatedly that while the clinical information in test results revealed issues, they were “inconclusive” and not correlated to any disease or structural abnormality and furthermore, they received multiple diagnosis’ and medications with no relief.


If this system works in the United States, why does it seem like no one I know is having success? Why does it seem like the system fails at multiple points because *drum roll* we don’t have an Electronic Health Records System? Coupled with that, the PCP may not have all the test results or communications with their other healthcare practitioners and patients don’t realize that their records are not freely shared between practitioners. We just assume the communication works well and we don’t ask for copies because we assume we would never understand the results anyway. That may be true, we may not be medical professionals but I  imagine most of us recognize the word “abnormal” or can tell when something is “out of range” and ask our PCP how this may correlate to the symptoms we’re having.


Inconclusive Conclusion


Doctors are fond of saying that the evidence is “inconclusive” and in this case, it is, for me at least. I feel in my heart that a lot can be done and should be done to start treating patients like people and stop the communication gaps that occur from having a detrimental, long term effect on the patient consumers who are seeking qualified help. We hear a lot of bad things, we experience a lot of bad things but then we see on the news how so many lifesaving treatments are affecting people’s lives.  I’ve said before, Doctors are “practising medicine” and there are a lot of conditions that require a combination of history, clinical results and know-how to diagnose. This does happen and again, it does work for some people. There are lives being saved and there are advancements we can all agree move us forward as a society.


But with that bit said, it’s still lacking for a percentage of patients who are left in the dark for years (like in Celiac or neurological conditions) without a diagnosis and with the quality of their daily lives going anywhere from slight decrease to being severely limited or where mortality is lessened significantly. Good people are suffering, perhaps needlessly at times, because communication fails, records aren’t where they should be and we take a passive role in something that should be more important to us than anything. Yes, it’s intimidating and I wouldn’t blame one person for being intimidated by the health “professionals” we sometimes come in contact with who may sneer a little or react downright rudely to our questions and pleas. I’ve been there a lot, even recently with the midwife I saw who responded to my questions very rudely and I basically “took it like a b*tch”.


All I can suggest is do what your heart tells you are right when it comes to your healthcare and your experience with your medical professionals. If you feel something isn’t being shared with you, request information and ask questions. I say to everyone who will listen (and those who would rather not) Be Your Own Healthcare Advocate. To that end, there is an article on WebMD about just that.


When people take an active role in their care, research shows they fare better — in satisfaction and in how well treatments work. A passive patient is less likely to get well.

– WebMD


I say this from my own experience with my own frustration.  While at times I feel horrible, I am capable of getting out of bed and generally functioning on a higher level than a lot of people. Those people need our compassion, our assistance, and our solidarity to demand better healthcare for all people starting with better communication. We do that by being own advocates, regardless of our health status and by encouraging others to be strong and not to be intimidated by “professionals” who ignore patients or push their own agendas.


*mumbles* At least that’s what I think. I could be wrong. I am, after all, nuts. So…





References and Further Reading:
Celiac Disease Tests
Blood Testing for Celiac Disease
Celiac Disease: Still Vastly Undiagnosed
Electronic Health Record
Reducing Costs of Misdiagnosis

This website is not a substitute for independent professional advice. Nothing contained in this site is intended to be used as medical advice. No articles, personal accounts, or other content are intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professionals advice.

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