JLRNL
Active member
- Joined
- Apr 2, 2012
- Messages
- 50
- Reason
- PALS
- Diagnosis
- 09/2011
- Country
- US
- State
- Utah
- City
- Hurricane
My big horror story.
After seeing several muscular neurologists, I decided to get one more opinion. This time I researched the internet to find a person that had some clout in the ALS network. With help from the ALS organization and many hours I found a neurologist I thought could give me a good third opinion. This neurologist was the director of the ALS clinic of one of the top 10 university medical centers in the USA. I contacted him and inquired if he would review all my previous exams and give me an opinion. I stated I would pay him for his time. He agreed yet he recommended that I also schedule an appointment with him for an examination and possible workup. This required some logistical scheduling since, I live in Europe. We made an appointment to coincide with the marriage of a daughter. So it would be three months before the appointment. He told me he would e-mail me his opinion of all my exams prior to the appointment. Waiting a month, no word from him, I called he reassured me that he would read them prior to my appointment.
The date of my appointment arrived, he never contacted me about my records, the billing office did however. My insurance would pay for the opinion, I needed to pay in advance then submit to my insurance co for reimbursement. Since I was considered an international patient, the deposit to be seen was $4000.00, yes I repeat $4000.00.
I filled out the forms the nurse gave, she then recorded my vital signs, blood pressure was high. I had forgotten my blood pressure medication that morning. I have been a hypertension patient since my mid twenties and was in the military when it started. It has always been a control problem and they have tried many different medications, it remains a high normal for me. You will understand why I bring blood pressure into this later.
I was brought to the exam room and told the MD would be with me shortly, the nurse instructed me to disrobe completely and put a gown on, I found this strange, I first wanted to speak to the physician. First a young lady came in and introduced herself as a neurologist on a fellowship at this University and would I mind her examining me. I said no, so she started the normal neuro exam. She was very gentle and kind during the exam, I will tell about one part of the exam for Babinski's reflex. She did it appropriately with a mild to moderate pressure starting at the heel and following along the outside of the foot to the ball of the foot going inwards. She repeated this on both feet a couple of times and had a positive reflex. It was by far a basic exam lasting about 5-10 minutes. When she was done she said she would now speak with the Neurologist I had come to see and they would then return. I asked her if she had read my history that had been sent. She was surprised and was not aware of any history and would ask the Neurologist- Director of the clinic.
Both Neurologists returned to the room, he introduced himself and then proceeded to start talking to me about my elevated blood pressure, he wanted me to go right then to the emergency room and get admitted because it was going to kill me before any ALS would. This shocked me. He did not want to talk with me about anything else, he kept going on and on about my blood pressure. Even after explaining to him that I have been under treatment for 35 years for the problem and it is always elevated and the specialists have and are doing what they can. No he wouldn't listen just kept going on and on. I finally told him I wanted to speak about the ALS and his opinion, he then revealed he had not read my history, that was sent to him three months prior, he had not reviewed any exams or results from any testing. He then did a 5 min neuro-exam that was worse than the MD had done before him.
Then came the most horrifying part of the exam, he wanted to test for the Babinski reflex since she had reported a positive response to him. He produced a sharp object from his pocket and proceeded to run it down the center of my foot with such pressure it produced enough pain to lift me out my chair if it had been possible. So I just laid there with tears from the pain, he repeated it 3 times on each foot. I had bruising the following morning. Then he looked at the other neurologist and stated, "see no Babinski's." Of course not the exam was straight from gitmo, If I had the strength the only reflex he would have gotten was the heel of my foot being imbedded into his face. Below is the description of an appropriate Babinski's reflex exam.
The Babinski response is often confused with the plantar response. ‘Plantar’ refers to the sole of the foot and therefore the plantar response is any response to stimulation of the sole of the foot; the Babinski test therefore reveals whether the Babinski response is present, absent, or if there is no response at all.
The method for conducting the Babinski test is very simple. A stick is used to scratch the sole of the foot from the heel, along the outside edge of the foot and then finally across the base of the toes. Even though the Babinski test is very simple it must be practiced and conducted correctly; the right amount of pressure used is very important. Too much pressure could cause the patient to move up and away from the instrument, which could lead to misdiagnosis of the Babinski response. At the other extreme, too little pressure could elicit a ticklish response in ticklish patients, which again, could cause the patient to move the foot up and away.
I guess he missed that day in medical school. He then looked at me an exclaimed, I don't know what you have, it's not ALS, I don't know what it is, he then rattled of all the diseases that had already been tested and ruled out. These were in all the medical records that had been sent to him.
Oh one more thing, he did a mental status test for memory, he asked me to tell him what were the three items he asked me to remember. I told him the first one, couldn't remember the second one until my wife blurted it out, bless her heart, she was trying to help, seeing me struggle, could not remember the last one until five minutes later and I blurted it out during his new triad about my blood pressure. He pointed his finger at my wife demanding that she take me to the emergency room, almost screaming, the blood pressure will probably kill him today when he stokes out. He then said I could come back again for more in-depth studies. I thought yeah, like that is going to happen. I was warned by a prior patient of his, that he had no bedside manner, he just has no manners. The entire exam lasted no longer that 20 minutes.
The neurologist that first gave me a diagnosis spent over 2 hours examining me physically, he was known as the University ALS Guru. So it was a wasted exam, trip and money. I have learned. I have not named the Neurologist or University due to possible retribution from them, however it was close to the DNC.
One last thing, when we were leaving they asked for the $4000.00, I almost wanted to tell them to get it from Obama care, but I restrained myself. I asked them for an itemized statement for all procedures and treatments. They came up with one level 5 physician consult and exam. I said ok that's all I'll pay for. It came to $423.35 for 1 hour total time and most of it was waiting for the exam of 20 minutes. I asked where the $4000 came from, they said it was an estimate for all future appointments and exams including another emg.
Sorry for being so long needed to get my venting out.
After seeing several muscular neurologists, I decided to get one more opinion. This time I researched the internet to find a person that had some clout in the ALS network. With help from the ALS organization and many hours I found a neurologist I thought could give me a good third opinion. This neurologist was the director of the ALS clinic of one of the top 10 university medical centers in the USA. I contacted him and inquired if he would review all my previous exams and give me an opinion. I stated I would pay him for his time. He agreed yet he recommended that I also schedule an appointment with him for an examination and possible workup. This required some logistical scheduling since, I live in Europe. We made an appointment to coincide with the marriage of a daughter. So it would be three months before the appointment. He told me he would e-mail me his opinion of all my exams prior to the appointment. Waiting a month, no word from him, I called he reassured me that he would read them prior to my appointment.
The date of my appointment arrived, he never contacted me about my records, the billing office did however. My insurance would pay for the opinion, I needed to pay in advance then submit to my insurance co for reimbursement. Since I was considered an international patient, the deposit to be seen was $4000.00, yes I repeat $4000.00.
I filled out the forms the nurse gave, she then recorded my vital signs, blood pressure was high. I had forgotten my blood pressure medication that morning. I have been a hypertension patient since my mid twenties and was in the military when it started. It has always been a control problem and they have tried many different medications, it remains a high normal for me. You will understand why I bring blood pressure into this later.
I was brought to the exam room and told the MD would be with me shortly, the nurse instructed me to disrobe completely and put a gown on, I found this strange, I first wanted to speak to the physician. First a young lady came in and introduced herself as a neurologist on a fellowship at this University and would I mind her examining me. I said no, so she started the normal neuro exam. She was very gentle and kind during the exam, I will tell about one part of the exam for Babinski's reflex. She did it appropriately with a mild to moderate pressure starting at the heel and following along the outside of the foot to the ball of the foot going inwards. She repeated this on both feet a couple of times and had a positive reflex. It was by far a basic exam lasting about 5-10 minutes. When she was done she said she would now speak with the Neurologist I had come to see and they would then return. I asked her if she had read my history that had been sent. She was surprised and was not aware of any history and would ask the Neurologist- Director of the clinic.
Both Neurologists returned to the room, he introduced himself and then proceeded to start talking to me about my elevated blood pressure, he wanted me to go right then to the emergency room and get admitted because it was going to kill me before any ALS would. This shocked me. He did not want to talk with me about anything else, he kept going on and on about my blood pressure. Even after explaining to him that I have been under treatment for 35 years for the problem and it is always elevated and the specialists have and are doing what they can. No he wouldn't listen just kept going on and on. I finally told him I wanted to speak about the ALS and his opinion, he then revealed he had not read my history, that was sent to him three months prior, he had not reviewed any exams or results from any testing. He then did a 5 min neuro-exam that was worse than the MD had done before him.
Then came the most horrifying part of the exam, he wanted to test for the Babinski reflex since she had reported a positive response to him. He produced a sharp object from his pocket and proceeded to run it down the center of my foot with such pressure it produced enough pain to lift me out my chair if it had been possible. So I just laid there with tears from the pain, he repeated it 3 times on each foot. I had bruising the following morning. Then he looked at the other neurologist and stated, "see no Babinski's." Of course not the exam was straight from gitmo, If I had the strength the only reflex he would have gotten was the heel of my foot being imbedded into his face. Below is the description of an appropriate Babinski's reflex exam.
The Babinski response is often confused with the plantar response. ‘Plantar’ refers to the sole of the foot and therefore the plantar response is any response to stimulation of the sole of the foot; the Babinski test therefore reveals whether the Babinski response is present, absent, or if there is no response at all.
The method for conducting the Babinski test is very simple. A stick is used to scratch the sole of the foot from the heel, along the outside edge of the foot and then finally across the base of the toes. Even though the Babinski test is very simple it must be practiced and conducted correctly; the right amount of pressure used is very important. Too much pressure could cause the patient to move up and away from the instrument, which could lead to misdiagnosis of the Babinski response. At the other extreme, too little pressure could elicit a ticklish response in ticklish patients, which again, could cause the patient to move the foot up and away.
I guess he missed that day in medical school. He then looked at me an exclaimed, I don't know what you have, it's not ALS, I don't know what it is, he then rattled of all the diseases that had already been tested and ruled out. These were in all the medical records that had been sent to him.
Oh one more thing, he did a mental status test for memory, he asked me to tell him what were the three items he asked me to remember. I told him the first one, couldn't remember the second one until my wife blurted it out, bless her heart, she was trying to help, seeing me struggle, could not remember the last one until five minutes later and I blurted it out during his new triad about my blood pressure. He pointed his finger at my wife demanding that she take me to the emergency room, almost screaming, the blood pressure will probably kill him today when he stokes out. He then said I could come back again for more in-depth studies. I thought yeah, like that is going to happen. I was warned by a prior patient of his, that he had no bedside manner, he just has no manners. The entire exam lasted no longer that 20 minutes.
The neurologist that first gave me a diagnosis spent over 2 hours examining me physically, he was known as the University ALS Guru. So it was a wasted exam, trip and money. I have learned. I have not named the Neurologist or University due to possible retribution from them, however it was close to the DNC.
One last thing, when we were leaving they asked for the $4000.00, I almost wanted to tell them to get it from Obama care, but I restrained myself. I asked them for an itemized statement for all procedures and treatments. They came up with one level 5 physician consult and exam. I said ok that's all I'll pay for. It came to $423.35 for 1 hour total time and most of it was waiting for the exam of 20 minutes. I asked where the $4000 came from, they said it was an estimate for all future appointments and exams including another emg.
Sorry for being so long needed to get my venting out.