Occam's razor is getting rusty

Occam's razor is getting rusty

Apr 15, 2021

 A fun thing about having the words "anxiety" and "depression" in my medical charts is that often when I see a new doctor i've never met, who has access to these e-charts, they've already formed an opinion. They probably don't mean to, but its something very real that i've dealt with over, and over, and over. Your problem is all in your head, they've already decided. Somehow, at different points, before I insisted doctors go ahead and run some tests anyway, I have been asked "are you sure its not your anxiety?"

Have you ever done your hair, make up and nails to go see a doctor so you'd look like you present neurotypical- so they'll listen?

As someone who is overweight, also, a second guess is always "I bet this wouldn't be a problem if your BMI was in range".

I understand that these charts contain information to help physicians look at a whole picture of a patient, but too often they see red flags and nothing more.

In November, I went to an oncologist. My PCP had been concerned about how my white blood cells had always been elevated and decided it was worth having a hematologist/oncologist look at my blood. This has been a problem for me for 11 years. I have not been overweight for 11 years, and I was not overweight when it started. At the follow up after running the tests, he made sure to let me know that being overweight can cause inflammation that could lead to higher white counts. I told him that I understood that as factually true, and I agree that it could be a contributing factor, but could he explain why the WBC count had been even more elevated at some draws when I was in the ideal BMI range? He then, and only then, suggested that I see a rheumatologist to look into autoimmune issues. If I was "just fat", the solution was clearly "just to lose weight".

Lives can be lost, and quality of life certainly suffers when physicians have preconceived notions like these that are allowed to persist.

Not all doctors do this, certainly.

But enough, too many, that I bet many will have a similar story. Anxiety in your chart? It's anxiety. Weight not their ideal? It's your weight.


I'm 34. I have had shingles TWICE already. I have already had post herpetic neuralgia in parts of my body because of this.

In July 2018 while I was driving I got a sudden and severe lightning bolt pain in the left side of my head that I'd never had before. I lost vision for a second, and I had to pull over for safety reasons. I did a quick self assessment and decided I wasn't dying, and drove home. I didn't have this happen again for several months.

It has continued happening, more and more frequently. I've quit drinking alcohol entirely as of December 2020, went from having half a pack of cigarettes a year to 0, and have cut caffeine intake back from about half a pot of coffee every day to a cup of quarter-caf in the morning most days. The lightning bolt of pain still comes randomly, and leaves just as quickly. There is a constant low level pressure along that area of my head at all times now.

In June 2020, I experienced full body petechiae after sun exposure and since have had even more extreme sensitivity to heat and sun. Even indoors if the temperature is over about 70, I get overheated and sick.

 You know that feeling right before you're going to puke where you have a cold sweat and it feels like there's lava and ice undulating under your skin for a second? I feel that feeling most of the time, every day- but especially in heated environments.

My hands and feet  experience hot and cold water both as burning until a few minutes of exposure. 

I have developed twitches and spasms in my hands, legs and face. 

Extreme and progressive sound sensitivity.

My PCP waved most of this off as nothing. Repeating the same CBC and vitamin tests as always. True enough, I was deficient in several things and started taking supplements, but the issues never resolved after levels were reached.

Today, I went to see a neurologist. For the second time. The first time, in December, was a referral to someone my PCP has in their network. He charged $300 for a 10 minute office visit where he asked me a few questions, and said come back in 2 weeks for an EEG. I called the office for a cost estimate and it would be $1000. Instead, I looked up an insurance suggested provider and went to their office. It was a drive, but worth it. The cost was lower, and get this:

The nurse took her time entering symptoms, asking me clarifying questions before she charted. The neurologist ran a series of simple in office tests, listened to everything I needed to say, and gave her suggestions. Before leaving the room she asked if I needed anything else from her. With tears in my eyes I told her that I have been trying to get someone to just hold still and listen to me instead of reading what other doctors have written. That I was so grateful for her time, and for talking to me like not only a patient, but a fellow human.

A pinprick test in the office confirmed that I have lost sensation in parts of all 4 extremities.

They're concerned for mild palsy in my face.  Oh, that's right- I have my RBF confirmed by a doctor now, y'all. V A L I D A T E D

They ordered an MRI of the brain with and without contrast, and labs I've never even heard of before: assay of aldolase, CPK, CRP, ESR and homocysteine.

I am worried, but I have been progressively worried about not having anyone take me seriously, as time went on and symptoms kept appearing instead of abating. 

They're concerned. Because they listened, and observed, instead of reading what other doctors had in their notes and waving me off.

They weren't in my doctors' network- I didn't have anxiety on my chart because it isn't a part of the e-chart system used by my PCP. Maybe this neurologist is just especially amazing. Maybe I've had bad luck getting doctors that have a one path system of diagnosis.

Listen- My sincere hope is that I am found to be imagining all of my symptoms. I hope my official diagnosis after these tests and then seeing a rheumatologist to rule out autoimmune issues, is "batshit crazy". Truly, I do. But I'd much prefer that doctors save that for last, after the tests are done, not the first thing they assume when meeting me, before we even say hello.

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