Wednesday, June 23, 2010

The medical community that reacts...

In the beginning of the history of medicine doctors were reactors by simple nature. They did not have the same extensive knowledge about the body, how it works and the many many things that can go wrong with it... And, at the time, it worked for them. Their job was to take symptoms, put them together and figure out how to treat the symptoms because causes were not always known then. If you had a rash, the doctor gave you a serum or herb or cream to soothe it. If you had a fever and a cough, they did the best they could, maybe it was a problem in your blood: Lets bleed you... See what I mean?

Physicians today sometimes seem to carry that same mindset. Thankfully today we have more diagnostic tools and sub-specialties to keep them in check with basic diagnoses. But those advancements didn't come from doctors with the "lets just treat the symptom" attitude. They came from curious, never-quit, questioning the "rules", overcoming the boundaries physicians that decided that just treating a symptom was not good enough for their patients! If it weren't for these docs we wouldn't have IVIG for Dermatomyositis and other autoimmune diseases. The heart transplant would be Science fiction, and a face transplant would be Frankenstein! If it weren't for rebellious minds that wouldn't crack under criticism, Dr. J wouldn't be placing titanium ribs in kids to keep them breathing despite deformities.

It's to bad these doctors are not the majority. Then people with symptoms that don't quite check out right would still have a fighting chance to get better early. Unfortunately with some diseases the fighting chance comes by when it is in late stages and recognized because of it's severity.

2010 is a different time than 1600. The internet makes knowledge available to the patient as well as to the physician. Some docs think less of the educated patient. Hypochoondriac. It's to rare. You shouldn't believe everything you read.
And in some aspects they can be correct. It does create a tension between a patient and a healthcare worker if the patient is convinced there's more than just a cold. But how many times have we seen this story and it be the outcome? If it didn't happen excellent TV shows like Mystery Diagnosis would not exist... In medical schools across America they are taught "Think horses not zebras" because horses are the more common obvious answer. It is sad that most physicians took this way to serious and they throw the zebras right out the window like they do not exist. I am in school to extend my degree. Nurse Practitioner is my goal. I saw this limited blinders perspective in my very first class, Differential Diagnosis. They even used the phrase, "If you hear hoofbeats think horses not zebras." And drilled it into us that because things are so "rare" they should not be in the first line of thought. I wonder how many cancer patients were diagnosed in stage 4 because of that thinking? At that time I had already been diagnosed with Ehlers-Danlos Syndrome, another zebra in the medical world. Something that was supposed to be so "rare"... So my heart sank when I heard them say that in class. Now don't get me wrong, I'm not saying every patient that walks into the room with a cold has West Nile Virus, but if they show the signs shouldn't it be considered and ruled out? And even if that is a "financial impossibility" with how insurance companies run our healthcare... shouldn't the physicians who are capable of diagnosing a common cold also be up to date and capable of diagnosing West Nile Virus? When I first decided enough is enough I found a primary care doctor. He was a very nice doctor. I would like to think if I had diabetes he could treat me for that, but he witnessed the first seizure I ever had. He said it wasn't a real seizure because I never lost consciousness and because I didn't soil myself. Do you know I don't know how many seizures I may have had between March and October. In October I had Petit Mal seizures, staring and somewhat myoclonic in nature. And when I realized it was the exact same as the one he witnessed in March and called a "pseudo-seizure", I was appalled. How could he not know that there were more types? How could I let him convince me that they were pseudo and just my body's response to pain? I knew in my gut that something wasn't right, but I trusted him. In my opinion, and that is just what it is, my opinion, if a doctor does not know the details of what he is diagnosing, he should not be allowed to make the calls on it at all.

So in saying that, I am thankful that my neurologist told me the other day that she just doesn't know enough about Cushing's disease to even test for it and that it sounded like a real possibility and that I should see an endocrinologist that knows more about it, and at the same time I am nervous about the primary care doctors who test for Cushing's but really do not know enough about it to understand that not everyone shows the "late stage" signs. In fact , people can go years and years with mild signs, and not even have some of the hallmark signs, especially if they are Cyclical or Mild. Same for EDS, mito disease and all of the mysterious elusive "rare" diseases that usually turn out to be not so rare.

When will the basic doctor accept the educated patient? Instead of acknowledging their thoughts (some don't even do that) and tossing them to the wind after the patient leaves, shouldn't it be that they are investigated? I mean that is how medicine advanced, through profound discoveries that took research and drive. The common mindset of "react" has been passed on through generations of physicians. What about "acting" instead of reacting? Do you know how many times in my career I have heard from physicians, "Just keep an eye on it" when I reported an abnormal finding? Really? And then they are discharged, never to have that problem checked out. Really? Sometimes it made me want to have the authority to actually do something about it... Do you know that up until I mentioned it my daughter's joints were never even checked, no range of motion checked. That is part of the basic assessment we learned, so when did it fall off of the charts?

Anyway, I felt this need to put that out there because my muscle biopsy tests came back as normal mitochondria. So I am sitting here with the thoughts that instead of being tested for a wide variety of things like I asked, I was tested for only a couple and now that months have passed by, and the result is back as normal, well, now I am back at square one. I am the educated patient. Insurance issues due to my worsened health has made it so that I do not have the freedom to seek out multiple opinions and different fields without my docs approval. If you are reading this and you have ongoing health mysteries like I do, do yourself a favor and procure a PPO. Excellent insurance and trusting your gut will get you better much faster.

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