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Medical PTSD
In 2021, I went to an urgent care, telling them "this is the sickest I have ever been". I was told to get a rapid covid test and return in 3 hours which became 3 days because a doctor never officially read the same result I had in MyChart. Finally get in and am told I have a staph infection and given antibiotics, and told to return in 48 hours if there was no change. There wasn't. I went to the ER and they did a lot of labs. Ultimately sent me home with the admonition to see a hematologist. I happened to have a hematologist appointment 5 days later, but, if I hadn't it's pretty much impossible to get a new patient appointment in a few days' time. By the time that day rolled around, I was incontinent, vomiting, running a 102.0.0.5 fever. I called the doctor's office and asked to speak to the doctor and explained my situation. Because they use a different charting system, this was all news to her. She told me to go to a specific ER where she has privileges. I got there and was thrombocytopenid enough to be transfused with platelets. I was taken on 3 hour ambulance ride to 'the only available bed'. When I got to the new hospital I was gray, except for where I was bleeding around my mouth and eyes. Early the next morning a phlebotomist came to draw my blood with a pile of vials and bottles. Jokingly I asked if they were all for me. I was hungry but was not allowed to eat because I was NPO. About lunchtime I was wheeled to a CT machine for a guided bone marrow biopsy. The only thing they told me is I was pancytopenic (too low platelets, red blood cells and white blood cells), I was given more platelets, meds and antibiotics over the next 7 days and sent home. I still had no idea why this happened. A week later I saw my primary on video. Without discussing a diagnosis she told me to look up myelodysplastic syndrome. I looked it up and it sounded like cancer. I was, after all, on an oncology ward when I was in the hospital. Nobody said I had cancer or MDS nobody really said I had anything specific. I wanted answers and managed to get the bone marrow biopsy report and there was genetic damage in the DNA. My primary referred me to oncology locally. They said it was likely due to toxicity from taking methotrexate for alopecia. I wasn't so sure because I had no methotrexate in my system for 2.0.0.5 months. The life/death cycle of red blood cells is around 90 days but the white and platelets are much shorter so how is this drug affecting me? I don't know and nobody else does. A repeat biopsy 9 months later was clear. My blood recovered over the last 3.0.0.5 years.
Something that has plagued me for 30 years is neuropathy and weakness in my hands. I was tested over and over for diabetes and I did not have it. Somehow the doctors decided, since they had no answers, it was all in my head, and gave me psych meds (!). One doctor ordered a cervical MRI and I had degenerative disc disease that was slightly touching my spinal cord. I was told repeatedly this could not be the cause. I have had emg after emg, x-rays, ct scans, mri's, I'm surprised I don't glow in the dark!! Every neurologist has told me it's diabetic neuropathy. I guess the neuropathy started before the hyperglycemia that the $@!% psych meds created. Who am I to know? I'm just the patient.
I ask for a new neurology appointment at a different hospital. I was directed to the spinal clinic who told me the same %@@! thing - it's diabetic neuropathy. He said I needed a new emg and physical therapy, neither of which I can refer myself to and he did nothing to further that goal. I finally go to neurology and after looking at the same MRI the last neurosurgeon looked at said I needed surgery to relieve compression on my spine. Back to the spinal clinic but a different doctor, and he said I most definitely need surgery to prevent further damage. In the year between surgeon 1 and surgeon 2 I have lost so much function in my hands, I can not longer do anything detailed, play music and often I cannot write my name.
My surgery is scheduled in 4 months from now. I cant help but think that that loss of function could have been prevented but when one idiot doctor writes "diabetic polyneuropathy" on your chart, it becomes the diagnosis, regardless of history, so the first surgeon just saw that and blew me off.
These two examples are far from the only times I have had care delayed, denied or been blown off by physicians.
So now, every interaction I have with doctors is met with suspicion. Now a new doctor has to prove their trustworthiness. This is not a conscious decision - this is medical PTSD.
It is absurd that a condition has to get irreparably bad for a doctor to take action. I don't think, in schools of medicine, they discuss things like medical ptsd. Often, particularly surgeons, they think of the patient as the disease, not a person.
I wish I knew how to change that about medicine, but, I wouldn't know where to start. It seems explaining this to other doctors falls on deaf ears.
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