My Medical Journal
Here, I will share my experiences with you as I see them, from my perspective—objective and subjective. I intend to keep on top of my medical problems, which seem headed in the wrong direction. My fear is a diagnosis of ALS; for some reason, I am not fearful of cancer… Why? Something is not right with my body, and my blood pressure is always the first to know.
I waited 2-3 months for this appointment, and this is the one appointment I wish I had missed. However, I did stumble upon the physician in charge on my way to the appointment. I want the opportunity to talk to him, not to complain, because I think the system is excellent.
Do you know why the resident thought of hysteria and ignored his exam (I am curious to see the documentation)? My father committed suicide, and my husband committed suicide; this resident presumed I must, therefore, have a severe mental illness: severe depression and PTSD. Do you see the problem here? This neurology resident had no clue what was going on because my symptoms were in his textbook. Rather than admit as such, he told me my symptoms were emotional and in my head. His attending an old white male believed him without an exam until I questioned the diagnosis, the attending then begrudging did his job and examined only my foot.
This neurology fellow told the attending my exam was normal despite that not being the case. His attending believed him and was not going to examine me but instead wrote a script for hardcore psychiatric meds. The fellow was not very smart, and neither was the attending. They both told me a lumbar MRI could not be ordered or nerve conduction studies because they would not know what to do with the results. Those words came from a Massachusetts General Hospital attending and fellow.
I kept thinking that fellow will be among the 20% of physicians responsible for most wrongful death lawsuits and his MGH attending was the perfect one to train him for this future.
The fellow must have read Tufts Medical Center medical records as he kept talking about my motive and how the mind worked. I was at a lost for words and a good thing too. Neither bothered to get the discharge summary of my recent hospitalization in NH, a week ago to find out I needed: a MRI of my lumbar spine; a contrast MRI of my cervical spine, a possible lumbar puncture, an EMG/nerve conduction studies, and neuropsychological testing if they thought hysteria was the reason for a foot drop.
Never again will I allow myself to be evaluated by anyone in training and neither should any of you, particularly, if you are ill. You have a choice! I am tired of being nice.
The above was not meant to embarrass this resident; instead, I hope he reads this and learns not to let his prejudices (biases) interfere with his judgment. I am not calling him a racist, just someone who needs a lot more training and more supervision.
How many white male doctors diagnosed with hysteria?
I expressed my concern about the care through the proper channel and about a week later saw a neurologist who specialized in peripheral neuropathy. Using EMG/nerve conduction studies, I was diagnosed with peroneal palsy. After several months strength returned to my foot and I could once again walk without a brace.
Um…..referring to a previous conversation we had, are you throwing out the window now,
1) that you have to be nice, and
2) that you care about people like your fine resident, the Tuff gang, Chip, and Claude? Just to name some of your closest ones eh?
I want to know, you know, as up till now you denied me your answers to those questions. Grmbl.
OH MBA,
I have different degrees of caring. Generally speaking, I care about nature. Of course, I care about YOU a whole lot, very much! 🙂
Oh good, because I wouldn’t want to sit on the same pile of manure like Masters Chip and Claude, hehe.
Hi, Angela,
Poor thing! I’m sorry you have to deal with this.
Have they looked into — hate to say it — tumors?
And tick-borne diseases? Lyme’s can lead to Bell’s palsy, as you know; and there are other tick-borne diseases that are quite deadly and we are just now learning about them. For example, there’s Powassan virus. People think it’s rare. It might not be — just underdiagnosed. Then there’s tick paralysis.
If they haven’t looked into it, they should.
I will email you privately later.
Good you stand up against such narrow mindedness. Doctors would do well to take a mandatory course on narrative inquiry, and learn to listen! I’ve heard it said by thoughtful and progressive physians that a persons story is a key element in health and wellness.
Yes, and that’s why I have found narrative medicine so intriguing. I’m not a physician, but a writer. Studying writing can make better doctors, when done correctly.
Very true…I was always awestruck at how people told their stories. I always remember patients often said, “no” if asked their chest pain even in midst of an acute heart attack. However if I inquired about chest discomfort, the response was invariably, “yes”–That is classic and mentioned in the textbooks. It’s those symptoms that are mentioned but not common that physicians often overlook. The myriad of diseases with abnormal exams but normal “tests” are the ones BAD doctors label: HYSTERIA, emotional, chronic fatigue, etc.
Hope you find answers, Angela. My wife was diagnosed with P.O.T.S. a couple of years ago and had several humiliating experiences. She was offered benzos by an ER doctor once to manage her “hysteria”.
Jeff, How long did it take them to make the diagnosis?
Well, her primary suspected lupus after a battery of tests but it wasn’t until she went to Mayo clinic in Jacksonville that they diagnosed it. Her primary referred her to Mayo. She’s old school Eastern European and thinks outside the box.
Because POTS mirrors chronic fatigue syndrome there is stigma attached for those who don’t understand the disorders.
Sounds like you were not too pleased with some of the labels they attached your wife…I can only imagine. Fortunately, you had an old school physician (female) who thought outside the box. My primary care is female and she listens also.
To answer your original question, at least a year from the onset of symptoms.
How is your wife doing now?
Better…maintaining. For the few six months after the onset of symptoms she was pretty much bed ridden. Onset also occurred almost right after her parents passed away a year apart so stress could have been the trigger. Her syndrome is blood pressure related and she has managed with a mixture of medications and environmental adjustments. She is also gluten free now.
Hope you find answers soon, Angela. That was the hardest part, the not knowing. I had a similar period of desperate uncertainty when I experienced clinical depression many years ago.
Angela, I didn’t know you were going through loss of funciton. Not being ambulatory is incredibly distressing You have deep knowledge of the medical community, so keep up with that. Have you ever taken a restorative yoga class or a pranayama class? These classes develop guided breathwork for 60 90 minutes. They are an extended relaxation and require a “soft focus” concentration. It centers the body, the breath, and the mind through what is called the subtle body. There are books about it.
My medical question is this? What is going on with your circulation in all parts of your body? My thoughts, hopes, and prayers are with you.
Hi Margie,
Thank you for your thoughts and prayers. My circulation is okay though I have Raynauds.
The decreased function is very distressing for me, someone who loves to dance.
I plan to start Yoga and hopefully, physical therapy soon.
Hello, I regret to hear the resident or even the attending were not the greatest, I usually find that most residents are more sharp and on the ball, well at least here in Ontario (there is always the odd one lol), as for you issues, my background is in Neuro Trauma ICU and my first instinct was an MRI or CT of head…….but definitely an EMG for sure and spinal CT/MRI or CT with contrast,……….these should have been done by now, you are a young woman, we need to get you back functioning! AS well be positive and believe that all is well, and things will and always do sort themselves out. you are in my prayers and please keep us updated on your progress, sending lots of positive healing energy , Piroska
Hi Piroska,
Good to know healthcare is better in Canada, confirms the data. Funny I get so few responses and answers I am beginning to accept the decline in my health as the new me….death is around the corner…I am concerned, very concerned.
I guess I should yell and scream to let people know there is a problem….that is not my style. I write. Very few doctors in this area that I trust. The neurology resident was from MGH and highly dangerous — No experience yet his supervising attending was not supervising and only examined my right foot at my REQUEST. At that point, he entertained a neurological diagnosis with the lead being hysteria.
In this country, doctors are so concerned about malpractice they have forgotten the practice of medicine or of caring for patients. Malpractice is now a non-issue unless the patient dies and then the patient cannot advocate,
I welcome your healing energy, positive thoughts and compassionate care from a distance. It is lonely in this neck of the woods, especially for someone like me who complains.
Best,
Angela
Hi Piroska,
I now appreciate your comments, thank you. I have questions for you.
• My Lumbar MRI showed an annular tear with disc herniation at L5S1 and no compression of the nerve root.
o Would a lumbar MRI with contrast add to the picture?
• The EMG and nerve conduction showed damage to the peroneal nerve. The neurologist was surprised when he could not elicit any activity with the EMG at the lateral right knee/leg. There were other findings. The nerve conduction was consistent denervation of muscles supplied by the peroneal. Otherwise, the nerve conduction was normal in all other muscles including the L5S1 area.
o Does not preclude a herniated disc?
• Do you have any further thoughts? Or ideas as to etiology that should be evaluated further?
Thank you
Angela