Perhaps a better word for modern doctors is diagnosticians.
When my car is broken, I take it to a mechanic. She or he runs tests to diagnose the problem and prescribe a fix. Sometimes the problem can't be found, or the symptom (that knocking noise) doesn't happen while the patient (car) is at the repair man and I'm told to bring it back at the moment it is happening if I can.
I take my car to the mechanic because I don't have the expertise to diagnose the problem and I don't want to take the time to read a manual and figure it out.
I do the same when I go to anyone of expertise, including medical doctors. That is what I am paying for - their knowledge and expertise.
I know doctors don't know everything. I don't expect that. But neither do I expect that I will have to do in-depth research on my own to try and figure out my diagnosis. Plus, when one is ill, one's energy is used up in just functioning every day - going to work, eating, dressing, bathing. Fatigue makes researching one's ailments difficult, to say the least.
In July, 2011, when I was given a diagnosis of serum sickness for my bizarre symptoms, I put all my symptoms in the serum sickness basket. I read and read and read about serum sickness. Everytime I had a flare up over the course of the following 18 months, I figured it was something to do with what had happened in my plasma due to serum sickness. But, having the same symptoms almost 2 years later and knowing what I know about serum sickness, I think the premise was wrong.
I think the diagnostician (doctor) made a diagnostic error.
I understand that and I don't blame the diagnostician. But neither should the diagnostician blame me for trusting the initial diagnosis and then later, still suffering with the same symptoms that should have cleared and for which no one still has an answer, researching to try to self diagnose.
Last week, I sat with a friend catching up, sharing our stories from the past few months. After I shared what I've been through physically, he responded, "So, you are back at square one."
"No," I replied. "There has been learning. So I'm not back at square one."
I paused and thought a moment and said, "I'm stepping outside the square."
Two days later, and after more reading and searching, I had a light bulb thought: I may never have had serum sickness. Rather this may be a straight forward side effect to terbinafine (the drug to which I responded with symptoms that were diagnosed as a serum sickness like response to oral terbinafine).
If I am reading information on a link correctly, the FDA has 31 reported cases of peripheral neuropathy to terbinafine, not much among the tens or hundreds of thousands of people who ingest terbinafine. But, how many cases may be misdiagnosed or undiagnosed or ignored, writing the patient off as exaggerating or suffering from some type of hysteria? How many cases go unreported? (My "serum sickness" case to terbinafine was not reported. I asked, "Shouldn't we report this so it's on file?" I was given the answer that there may be somewhere I can find to report it. It was left up to me to find out where and how.)
I'm pretty dang sure that I have my diagnosis figured out. It's not serum sickness or allergies, but small fiber peripheral neuropathy brought on by a toxic substance. Now I need to figure out how to present it intelligently and respectfully to a new diagnostician to get the proper tests. I'll be open to being wrong, once I am proven wrong.
Remember Carol when you were diagnosed with a herniated disc confirmed with the right test, an MRI? You presented your doctor with a route to try while presenting your doctor with Dr. Sarno's book and research you found online. The doc listened, read the book, and agreed to give the approach a try...and it worked.
I can do this. My very quality of life and future may depend on it.
Have confidence Carol, not arrogance...but confidence.
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4 comments:
You can do it Carol! I have faith, in the fact you have persisted this long and want to keep going until you get a correct diagnosis and cure.
Doctors have made me wonder for a long time, some who seem to perform miracles, like the doctor in the 1950's in a small town hospital, who sewed my Mother's big toe and ball of her foot back on, after he sent Dad out to the hay field with a bucket of ice where the accident happened, to look for the toe. Dad found it, still inside the mangled shoe he had throw as far as he could in frustration. That "miracle worker" sewed it back on, and a year later, you couldn't tell it had taken a high flying ride in a bloody slashed shoe in the heat of summer...and thankfully landed under a shade tree.
Then there are the doctors, like the one who told me my second infant was dead inside me after 12 hours of horrific forced labor, who painfully jerked it out with forceps, only to find it was very much alive. Then he told me it best he not live because he would be "brain damaged."
Maybe, but he's now a top notch math teacher and raised a soon to be "expert" pediatrician and a meritorious Iraq experienced soldier who remains on the deans list who will be a senior in the fall, and will go back to the Army an officer to try and correct some of the military's mistakes he personally encountered in the Middle East.
Hooray for that stupid doctors assessment of "brain damage!"
My current "Primary Care Physician" says he specializes in "preventative" healthcare and I have to go in every three months, let him draw some blood, and then tell him what's wrong with me, if anything, and how it should be treated. He no longer argues with me. I've proved him wrong too many times.
So see Carol, some doctors do not know it all...some know more than all the rest put together...so you hang yourself an M.D. document on the wall stating you have graduated from the Medical College of Self Education...and keep on trucking! You can do it...you are a wondrous woman with an unflappable spirit!
With each new doctor I encountered I tried to impress upon them that I was there as a team member in my own health care. That I wanted to be part of the team. That just as I listened to them that I needed them to listen to me. I even told one doctor that I needed him to acknowledge my knowledge.
For the most part I must admit that I worked on connecting with them as fellow human beings. I once had a doctor take me aside after a busy day in the operating room. He asked me why I was different then the other nurses. I asked him to explain. He told me I was different because I didn't get all in a tizzy around the doctors. He wanted to know why. I simply said, "Because I know you aren't God and the other nurses treat you like you are Gods. You aren't Gods. Your human beings that just happen to be doctors. That doesn't make you a better human being."
I was around 23 years old when I said that. Oh the confidence of youth! *grin*
Confidence is the word Carol. :-)
Love your stories Anna. :-)
Zoe...I love yours and Carols story's also...and I probably wouldn't be so bitter if things had changed all that much.
As I mentioned, I have to go see my primary care doc every three months if I want to get my Estrace renewed I've been on for over 30 years...but...If I have a minor or a major problem in between scheduled visits...I have to go to the Emergency Med Clinic and pay a lot more because MY doctor is too booked up preventing illness to worry about one than might not manifest on HIS schedule. :)
Thanks Zoe & Anna.
I read and reread your responses here. They really are helpful.
I decided to call a neurologist that one of my clients suggested. This appointment is not a referral from another physician but direct from me. I am in process of finding another primary care doctor.
Before making the appointment with the new neurologist, I asked the new neurologist office if the doctor with whom I wanted the appointment diagnoses and treats small fiber neuropathy. Interestingly, the receptionist responded, "He does. Be sure to bring all the tests you've already had done." Well, I hadn't told her that I'd had tests done. Maybe they've run into this before with other folks who have small fiber neuropathy. (The typical tests for neuropathy are usually normal with the small fiber brand.)Or maybe it's just a standard thing the office tells its new patients.
Anyway, I'm hopeful, I hope.
The acupuncturist is awesome. I'm drinking my herbs and seeing him two times a week. If nothing else, at least it is comforting to have someone listen and empathize and believe me. (Not saying the other doctors haven't believed me; but I do feel I've been 'dismissed.')
Another ironic thing: The acupuncturist's first name is Andres. The neurologist's first name (that I see next Monday) is Andreas. I'm not into "signs"...but if there are such things, maybe I've got one. I hope so.
Hmm...the acupuncturist office that I'm going to was recommended by another of my clients. Interesting.
Thanks again!
<3
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