Painful realization now that I found a good doctor

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This post is not medical advice. Trigger warning: medical misogyny, psychologization, medical neglect, medical trauma.

I also want to state very clearly that mental health issues, disorders and struggles are real. People who suffer from these deserve to be treated with dignity and respect. It is my belief that most if not all psychiatric conditions are in fact organic, physical conditions including trauma based). it is dangerous to misdiagnose, but I am meaning no harm or dismissal for folks with mental health struggles. You are valid.

One of the things I have been thinking about lately, after meeting with the unicorn doctor is just a simple fact: The other doctors over the decades simply did not believe I had a biological illness, or in the case of my PCP did not believe it was severe enough to try other meds.

I am bedbound. That ,by definition, is severe.

Before meeting with my current specialist, all the medications , except my asthma inhaler were all based on my, a severely ill patient's research and recommendation. I was also denied many medications. Medications that have less risk profiles than putting an asthmatic on beta blockers.

The only meds I was allowed were meds also used for psych conditions. I consulted with a neuropsych a few years back. Ironically, this psychologist did the opposite of psychologizing me and said he basically couldn't really help me because I did not have any psych illnesses except medical CPTSD but that is more an "injury" than illness ( I mean that literally. It causes brain damage). It turns out of you are abused for decades by people who are supposed to help you, it does indeed cause harm. He also went on an epic rant about neurologists psychologizing patients even those who have seizures. This is a leading expert in the field who said this. It was quite validating.

Any other meds I would ask for I was immediately denied. This is not just one doctor. Literally every doctor for over 30+ years.

My basic med stack was guanfacine (for me used for orthostatic hypertension), Provigil (used for brain fog . it doesn't and never has acted like a stimulant for me) . Before that I was put on beta blockers that are also used for performance and generalized anxiety.

I had SNRIs pushed.In fact one doctor tried to trick me into taking one. They are contraindicated for tachycardia and high blood pressure. Actually very dangerous. But the doctor just said I was "too sensitive' and "too afraid" to try it. I already tried SNRIs.

I also was put on lyrica which is psychotropic. Not like a anti psychotic but usually given to patients for fibro pain or. like anyt pain these days. It did nothing for me but give me side effects and raise my already high heart rate.

When I told the good doctor this he said "yeah lyrica and gabapentin only work for diabetic neuropathy and even then not all the time . Maybe some mild relief for other patients but they are not good medicines and even with your neuropathy won't work. Less than 2% of my patients respond well to these drugs". This is what I hear from other patients like me as well. These meds do nothing for most people's pain, have horrendous side effects and are given out like candy. If these meds work for you, great. I'm not judging that.

Whenever I would bring up other meds, meds with low risk profiles in terms of side effects and also not controlled substances, I would get rejected. Immediately. These are common meds used off label for my condition(s). Basically if they aren't psych meds, or adjacent doctors every single one said no.

Until I met the good doctor. Who after looking at my history, talking to me and all that recommended to start...the same meds I have been begging doctors to let me try. He also made some other suggestions I was not aware of. It was refreshing to not have to use my time (and money. healthcare in the US is not cheap)educating him as I often need to do with my other doctors.

I now am trialing a list of medicines. The new doctor said this is just the beginning and he knows of other treatments if these do not work.He is not shaming me if the meds don't work like other doctors have.

The difference? This new doctor understands that my illnesses are not in my head (though a lot of it is driven my brain inflammation). Data that predates my birth has confirmed this. Yet these illness are still stigmatized. Patients are still seen as "hysterical" or dramatic. It's not like this is new information. I do not have rare conditions and the proof of their biological nature dates back in the US to the 70's and earlier in other parts of the world. I know a TCM dr and there are texts dating 2500 years ago about these conditions.

Neglecting patients like me is a choice.

Before you say "well your conditions are complex" so is Parkinson's and ALS . These are very complex neuroimmune conditions just like I have. Guess which sex gets those conditions more often? Spoiler: : it's not women. We treat complex debilitating conditions in men while millions of women rot in bed in excruciating pain with no treatments.

This new doctor may trial me on some MS or Parkinson's meds because of the biological similarities in those illnesses and mine.

I have been suffering for decades and there were treatments, I was denied simply because of the stigma around my illness cluster. Studies, including recent studies have shown the stigma around my main condition is even objectively worse than that of psych disorders. Stigma sucks for everyone but patients like me are doctor's favorite punching bags.