Are The Lights On Anywhere?

Maybe it is because I've had 4 of these clients in one week--and it is only Thursday. Or maybe it is because both my daughter and I have experienced this same phenomenon. All I really know for sure is how upset and outright scared I am about the lack of thought most MD's are putting into patient care and about the system I call "The Shuffle."

"Betty's" experience is fairly typical so I will use her as the example. Betty and her husband went on vacation. While she was on vacation she became nauseated. When she got home, thinking she had picked up a "bug" on vacation her primary care MD gave her an antibiotic and an anti-nausea medication. Within 4 hours after taking them she started vomiting and shaking uncontrollably. Hubby calls an ambulance and transports her to the ER. They gave her fluids and Xanex. The shaking stopped and they sent her home telling her not to take those meds and to see her primary. So, the next day she called her primary who told her to discontinue both drugs and referred her to a gastroenterologist for the nausea. Shuffle #1.

The gastro did a colonoscopy which was normal, pronounced her with chronic constipation type IBS, gave her more Xanex for the tremors and a bunch of meds for constipation and shuffled her back to her primary. Shuffle #2. That was 3 months ago.

The tremors have continued. She is no longer capable of driving since she doesn't know when the tremors will strike. I witnessed them twice in my office and this is not shakey hands and arms. These are almost seizure magnitude tremors. She is complaining of memory loss, inability to concentrate and back pain. She is pale and listless. All of this had a sudden on-set while on her vacation. No falls, no accidents, etc. None of this was a component of her active and engaged life before. These symptoms have totally disrupted her life. I became alarmed and made certain to pay attention to her gait as she walked with me from my office to the reception area. She was bending forward slightly, took small steps and had a hesitating gait at times. Alarm bells were going off in my head at a deafening level.

But, the scary thing is that alarm bells have NOT been going off in her primary or gastro's heads. Neither of them have referred her to a neurologist or infectious disease specialist. They have not ordered CT's or MRI's of her brain or nervous system. The only blood work has been a routine chemistry profile done in the ER three months ago. She has complained of her symptoms multiple times to both docs and has been ignored. She was told she needed to discuss her symptoms with a psychologist. Shuffle #4. The psychologist has not made any progress on her symptoms and is still rehashing her dysfunctional childhood. In desperation she sought out help for her IBS and landed in my office.

Why have these symptoms, which may point to a life threatening illness, been ignored? Doesn't it make sense to send her to an infectious disease specialist and a neurologist just to rule out anything life threatening before sending her off to the psychologist? Shuffle #4 indicates she was just shuffled out of conventional medicine system and into the realms of somatoform disorders with nothing more than a cursory investigation.

Why should that not scare the pants off me and every one of us? As educated and aware as I am it happened to me for over 3 years before I was finally diagnosed with an autoimmune disease. My daughter has had it happen to her twice--in two different regions of the country. "Betty" is the 4th client I have seen THIS WEEK with this same M.O. Either they are shuffled to countless specialists who each only look at their tiny spectrum and pronounce "not an endocrine problem" or "not an ENT problem" and sent back to their primary. Or, they get only a cursory exam before being labled with a psychogenic reason for their symptoms and ignored ever after--labeled as chronics or as problem patients. My computer repair man died from The Shuffle last Nov. He was never diagnosed and was told his symptoms were due to "stress" or that he was somatizing his symptoms and to get long term counseling. He died within 5 minutes of being told that the last time.

Healthcare Reform only addresses availability of health care. It does nothing to address the lack of quality in healthcare. What are we to do? I know I see more clients like this than other people due to the nature of my practice. But, if I am seeing such an upsurge in the numbers of clients like this in my practice there must be scores of others out there that do not cross the path of anyone who becomes alarmed and attempts to help. This Shuffle creates a whirlpool that becomes a downward vortex, sucking people into it never to surface again. On a personal note, what is to happen to me as I grow older and my body begans to reap the rewards of my lifestyle in my 20's and beyond? Since I am not a passive or meek personality I assume I will quickly get labeled and shuffled out.

We all should be scared, very, very scared.

Tags: IBS, nausea, pain, psychogenic, somatoform

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Comment by Liza Boubari on December 25, 2010 at 9:25pm: I'd like to share something that one of my clients sent me:

Hi Liza. I just wanted to update you with my health results.

I was found to have a giant multi-nodular goiter in my neck, was diagnosed with Hasimoto's (a thyroid autoimmune disease), was found to have tracheal stenosis, my trachea 80% blocked by scar tissue (kind of explained why I felt so out of breath and unable to exercise - the doctor didn't know how I could even walk across the room), and when looking at my records to prepare for surgery, a surgeon noticed that when I had my CT done for a concussion that the neurologist reading the CT had recommended TWO YEARS PREVIOUSLY that I be referred to a neurologist for further testing as I have some major enlarged ventricles that may turn me into a vegetable in a few years! (Really what she told me is that, according to my CT Scan I should be sitting in a corner drooling on myself, but obviously my brain was finding a way to compensate. No one told me this before!)

So after all these years of mentioning problems (and gaining weight), while my doctors kept saying, "It's just perio-menopause/menopause, just relax, maybe you should take an anti-anxiety drug, maybe you should see a shrink, maybe you should take some hormones, try taking a walk, take a yoga class, just calm down, honey....", I was, (as my doctor that I now see in San Diego said) slowly being strangled by my own body and suffocating (which, as he pointed out, would cause anyone to feel a little anxious).

Kaiser has referred me to UC San Diego where I have had four surgeries in the past 5 months to try and give me a decent airway. Unfortunately the surgeries are not holding and I am forming scar tissue almost as fast as they can dilate my trachea. The doctor down there has referred me to Massachusetts General in Boston where they deal with difficult cases. They may have to go in and cut out the bad part of my trachea and sew what's left together.

It is more like someone put their hands around your throat to choke you and just left them there squeezing your throat. You feel like you are always being slowly strangled (because you ARE!). Most women who have it are mistakenly diagnosed with asthma for years before it is discovered (or they are just told they are crazy), but the difference is, asthma comes and goes - this is ALWAYS there! It is more frightening than painful. You wake up in the middle of the night choking and coughing because you only have a tiny bit of space to breath and when you turn your head in your sleep, you can cut off your own air supply.

I only mention all of this because I know that you work with a lot of women and this condition is commonly misdiagnosed or not diagnosed at all. If you come across someone who has unexplained wheezing and coughing and seems to be unable to speak quickly or walk upstairs without gasping for breath - they need to get to a pulmonologist and have a scope put down their throat to check it out! It's called Tracheal Stenosis.

You take care and may God Bless You and the work you do.
Deborah.

Comment by Cheryl Westley on August 26, 2010 at 3:44pm: Self-diagnosis* is also becoming much more common..... gee, I wonder why???

* via Internet symptom-searches and all other available sources of information...

Comment by Bill Kennedy on August 26, 2010 at 2:53pm: You hear stories like that in Canada as well. Everyone needs an advocate when dealing with the health care system. The system is filled with well meaning, competent, caring people, but many are over worked and sleep deprived. They don't have the time to ponder someone's symptoms and come up with a diagnosis that matches ALL of the symptoms.

Comment by Michael Ellner on August 26, 2010 at 12:35pm: Hi Melissa,

The "The Medical Shuffle" that you are describing is the direct result of "protocol medicine." It is the reason that millions of people have given up on conventional medical practice and are looking for help outside of conventional medical care.

The abuse and lack of care that you describe is rampant -- It certainly reflects the experience of a large percentage my medical hypnosis clients who suffer from medically unexplained symptoms.

The real bad news is that health care reform will give us more of the same instead of delivering better care. I believe that it will continue to get worse and worse until health care consumers revolt and refuse to be exploited like this.

Until then, all we can do is share information, network and work together to educate our clients and our peers.

Thanks for posting this.

Michael E.