My name is Joseph Kevin Southworth and my life is in danger because I lack a proper diagnosis for Autonomic Dysreflexia-Hyperreflexia (AD-H). All I need is a Neurologist and a blood pressure pulse rate monitor that takes and records automatically and less than 10 minutes, but this request has been denied several times for different reasons. What I do have is a prescription for Nifedipine that reads "Nifedipine 10 mg immediate release, bite and swallow PRN Autonomic Dysreflexia symptoms. May repeat in 30 minutes, then go to emergency room" from Dr. Douglas Chang, an Orthopedic Surgeon with a spinal column specialty, 11-28-2006 after I showed him BP PR variations in my medical records that were overlooked and his testing and observations.
My accident was 2-9-2000 and after 4 days of symptoms I started posturing and was driven to an ER where I explained that I was struck against a wall by a Snorkel Lift on a construction site and "I believe I have a SCI because I'm posturing". It was obvious that I was suspected of being on drugs by the way I was being treated. There is an excessive amount of catecholamines in my system during an episode that makes me anxious with tremors. I was told that I tested positive for "Heroin, Cocaine and Crystal" by Dr. Susan Christiansen (in front of a family member). I immediately denied the sample being mine and would later find that the doctor had lied believing that I would admit to drug use. Before the nurse tried to start an IV she removed me from the vital signs monitor and missed the chance to record the massive Paroxysmal Autonomic Dysreflexia-Hyperreflexia episode she was about to induce when she penetrated my skin with the needle. I turned white as a ghost and sweat flowed out of me, the nurse jumped back away from me and yelled "What are you on; I can't help you if you don't tell me what you?re on". I paid for and received my medical which had a large portion "blacked out. When I presented the medical records to the family court they accused me of the adulteration of the document. My medical records did not indicate that I tested positive for "Heroin, Cocaine and Crystal".
I was forced to settle my claim after three Neurologist Dr. Bruce Lasker, Dr. Robert Warren and Dr. Ford did not believe that I had a neuropathy (Dr. Lasker told my father behind my back that he thought that I was on drugs). When symptoms continued I started a Social Security case and started to study SCI's on the internet and I eventually obtained a copy of; Pathophysiology: Concepts of Altered Health States by Carol Mattson Porth and at the end of 2003, after a year of study, I knew that I had Autonomic Dysreflexia-Hyperreflexia (AD-H). I started seeing a primary doctor, Dr. Denise Parnell (the first that I would tell that I believe that I have AD-H) who had difficulty understanding the medical evidence that presented itself, but knew something was wrong and referred me to the Neurology department at UCSD Hillcrest.
When I showed up for the appointment my blood pressure and pulse rate were taken and the male nurse ran down the hall and returned still running with two nurses. When I asked "what was wrong" I was told "Your systolic pressure isn't even 70, your close to death". I asked that event be recorded but my BP was taken again and the second result was written down. When I tried to tell Dr. Swaili about my BP she shouted over me for 30 seconds and I took my medical records and walked out and asked for another doctor. Dr. Delaney said he would give me a chance to speak after an exam; instead he walked out stating "There's no neuropathy here". My second appointment at UCSD Hillcrest started with Dr. Desai stating "My opinion will not be any different from the other Doctor's". The third visit to UCSD Hillcrest was with Dr. Song and two medical students. They were shown by me, a medical document that had the results of a blood test that indicated that my Triglyceride level was 3,432. I was asked, ?Why are you showing me this". I replied "It's evidence of my SCI". The tremendous amount of effort that the four men in front of me would make to laugh at and ridicule me would only apply to their own humiliation. I was one hundred percent correct that liver enzymes and digestion would be affected by AD-H. Appointment four with Dr. Buchanan only resulted in him referring me to Dr. Marshall who said "I see no need for another appointment".
I learned that AD-H could also be diagnosed by an Orthopedic Surgeon with a Spinal Column Specialty and so I made an appointment with Dr. Douglas Chang. During the appointment Dr. Chang made a comment about my tongue moving back and forth laterally (indicates medullary neuropathy, brainstem injury) and also asked about my sudden inspiratory gasps. I was only less than two months into my condition when the first comment was made, "It's like your trying to breathe through a straw". Sudden Inspiratory Gasps are a "hallmark of Multiple System Atrophy". Combined with other symptoms it points to the Shy-Drager variant of MSA, where Autonomic Failure is dominate. Then Dr. Chang had me remove my shorts and lie on an examination table in the fetal position. He asked "Can you feel this"? I replied "Can I feel what"? Dr. Chang again asked "Can you feel this"? I again replied "Can I feel what"? For a third time Dr. Chang asks, "Can you feel this"? I replied, "I feel the tugging but I don't feel the point of contact". When I got home after the appointment with Dr. Chang my mother told me that I had blood dripping down my legs I went to the bathroom and with a handheld mirror saw that Dr. Chang had lacerated my sphincter three times.
The first Social Security doctor that I saw asked me to stand with my back to him and he shoved me in the lower back forcing me to catch myself, using the wall. The doctor said "spinal cord injury, yeah right" then walked out of the room. I could feel the AD-H episode coming on and lingered in the examination room but was told to leave by the nurse. I sat briefly in the waiting room and some patients began to ask if I was all right most likely because I was turning white. I knew if I stayed I would pass out so I walked the one block too my car and passed out from a Complex Stroke while trying to get my legs in and close the door. I regained consciousness and could see several people at the community garden (at Front St and Juniper St on Banker's Hill) were looking my way. I got the keys in the ignition and rolled down the windows and then sat upright and closed the door and then had a second complex stroke. It would be about twenty minutes before I would drive home.
I retained Binder and Binder after my Social Security was denied and they referred me to Dr. Michael Sukoff. Dr. Sukoff spent the first part of the appointment with a physical exam and then looked at my MRI's. I requested to be hooked up to a blood pressure pulse rate monitor and I would show changes when I stand up. Dr. Sukoff said it would not be necessary because he believed that I had an SCI. I waited approximately two months for the Doctor's Report before I called Dr. Sukoff's office, the first of several calls that yielded no result. It wasn't until Binder and Binder called that I got a Doctor?s Report that did not reflect Dr. Sukoff's confidence in my SCI that he displayed during the appointment. My Social Security was denied again and I made another appointment with Dr. Sukoff. This time I went in with a full bladder and my Blood pressure was high and my Pulse rate was slow. I then stood up and my Blood pressure dropped eighty points and my Pulse rate rose significantly. I then went to the bathroom to empty my bladder and then my Blood pressure dropped fifty points and my Pulse rate rose and then they stabilized as the same result was repeated. Dr. Sukoff realized that he had made a mistake and asked me to leave his personal office. I then talked to Dr. Sukoff's office manager Vicky stated "We can't fix this without admitting a mistake and exposing ourselves to a lawsuit".
After my diagnosis by Dr. Douglas Chang (11 -2006), Binder and Binder started a Social Security case on my behalf, without submitting my medical records. I repeatedly asked for them to submit my medical records but they refused. Before Social Security Judge Leland Spencer I argued against the Binder and Binder attorney saying I had the right to submit all of my medical records from February 2000 and she argued that I could not. I won and I terminated the relationship with Binder and Binder. The reason that they would not submit my medical records is they would become subject to a lawsuit if I won my Social Security with the same medical records and Dr. Chang's diagnosis as compared to the same medical records and Dr. Sukoff's report that were not successful the first time.
While walking at Wind and Sea beach (on forearm crutches) I was approached by a woman (who would later say her name is Catherine) who encouraged my rehabilitation because she used to be in a wheelchair. When I asked what her disability was she began to describe the same symptoms that I had. I asked her if she had AD-H and her jaw dropped. Around the same time as my accident, she had a snow skiing accident but tried to keep her job and pay her bills. She had one Transient Ischemic Attack (TIA) after another until she was too weak to walk. She had the same primary doctor as me (Dr. Parnell) and also had to figure out her AD-H on her own, but she was able to get social security with a proper diagnosis.
I was asked by a friend to go to the Ramona Animal Shelter to see if their lost dog was there and it was. During the paper work I noticed that one of the volunteers was constantly looking at me. Right before I left the volunteer walked up to me and asked me "What is the extent of your spinal cord injury". My response "I've been fighting with my doctors for over two years trying to convince them that I have a spinal cord injury". Her response "It didn't take me a minute to figure out that you have a spinal cord injury because you are clearly posturing, if your doctors are not treating you for a spinal cord injury then they don't know what they're doing, I recently retired from a career devoted entirely to spinal cord injury". She told me her name was Carol. I would later return to the Ramona Animal Shelter and leave my name and number with the manager in the hope that I could get more information. I was told that Carol was the head RN of the SCI ward at Loma Linda. I would receive a call from Carol and had a very productive conversation for about thirty minutes.
I made an appointment at Loma Linda Hospital with Dr. Dashtipour and would specify the need for a BP PR machine that was mobile on a cart and had the longest lead for the arm cuff as possible. It was the first thing that I asked for during the appointment and Dr. Dashtipour refused offering only the hand operated Sphygmomanometer that was mounted on the wall. If I stood up and crossed the examination room to take my BP PR, the event of Orthostatic Hypotension would be over before they could put the arm cuff on me. Dr. Dashtapore also refused to listen to the story about his former colleague and he made it on her list of "doctors that don't know what they're doing". After talking with an administrator about what had occurred I was sent a letter stating that they would only communicate with me by letter.
I went to Oceanview medical clinic where a security guard had an issue with me laying on the floor of the waiting room saying, "if you need to lay on the floor you should be in the ER". I spoke to Dr. Tudor about how sitting to long could aggravate my condition and cause a stroke, and I also requested to please don't let me linger in the waiting room at my next appointment. As I waited for my next appointment, I began to catch the doctor and other staff peaking around the corner to observe me. After one hour and ten minutes I walked to the exam rooms and found an empty one to lie down in. The doctor and a nurse tried to get me to leave the exam room, but I refused, waiting another hour and twenty minutes (2 1/2 hours total) until the doctor came into the exam room and declared "you obviously don't have what you think you have because you're still alive".
While I was driving, I was called on my cell phone by someone who said her name was Melissa from UCSD Thornton and she had some pre-MRI questions for me. I said only if it doesn't take long because it would aggravate my condition to drive and hold a cell phone to my ear at the same time. After several questions I was asked if I had ever done any grinding of metal without goggles on. I replied Most of the time I use eye protection. The question was repeated more aggressively and I responded that it doesn't matter because I have had MRI's with you before and several other places and have never had a problem. The response was even more aggressive and I said I don't want to be questioned anymore and hung up. When I showed up for the MRI, I was in the tube for more than an hour only to be told that the MRI machine was not working properly. And only one of the two MRI's was successful. I was told I would have to reschedule, which was done. Prior to the MRI, I went to the MRI facility to do my pre MRI questions in person. I spoke to the nurse with a female Doctor seated nearby listening to me tell about the phone call, while I was driving, that didn't go well because of how easily my condition gets aggravated. I was asked what condition do I have and I responded "Autonomic Dysreflexia-Hyperreflexia, it endangers my life by giving me strokes. I was then asked if it had something to do with a spinal cord injury and I replied "yes, that?s what the MRI is for". While I was driving to the MRI appointment I was called on my cell phone by the doctor who was sitting close by and listening to the conversation between me and the nurse. When I said I had already done my pre-MRI interview, I was told I would have to do it again or I wouldn't get the MRI. The aggression was over the top and I ended the conversation by hanging up. I went to complain about the incident to the head nurse Maria Alvarez and the result was their refusal to provide me any further treatment because I was upset with this malicious attempt to give me a Stroke. Provoking the fight or flight mechanism is a well-documented triggering mechanism of AD-H.
The Medical Board of California has refused to supply an independent Neurologist, saying I need to hire a Neurologist to back what I'm claiming. The next ten Neurologist that I would see and approximately ten more Neurologist that were contacted by phone would refuse to take my blood pressure and pulse rate because they did not want to be liable in case I had a Stroke or Cerebral Hemorrhage. The first was Social Security's own Neurologist while speaking to the Judge. The last Neurologist was Dr. Ruby Koshy, an associate of Dr. Dashtipour at Loma Linda, and it took one year to get an appointment with her. The first thing that I did during the appointment is to point to the sign on the door and said I need her too declare me disabled. Dr. Koshy responded "I don't know anything about your medical condition". I said "No problem I'll teach you". Dr. Koshy responded "I don't have enough time; I have a lot of patients". I responded "It only takes five minutes". Dr. Koshy responded "We don't have the resources here". I responded "All we need is the blood pressure, pulse rate machine that the nurse took my vitals with". I was denied the ability to prove how seriously AD-H endangers my life and Dr. Koshy refused to refill my prescription for my rescue medication Nifedepine. I was told to go elsewhere for treatment.
Murder through Omission?
My accident was 2-9-2000 and after 4 days of symptoms I started posturing and was driven to an ER where I explained that I was struck against a wall by a Snorkel Lift on a construction site and "I believe I have a SCI because I'm posturing". It was obvious that I was suspected of being on drugs by the way I was being treated. There is an excessive amount of catecholamines in my system during an episode that makes me anxious with tremors. I was told that I tested positive for "Heroin, Cocaine and Crystal" by Dr. Susan Christiansen (in front of a family member). I immediately denied the sample being mine and would later find that the doctor had lied believing that I would admit to drug use. Before the nurse tried to start an IV she removed me from the vital signs monitor and missed the chance to record the massive Paroxysmal Autonomic Dysreflexia-Hyperreflexia episode she was about to induce when she penetrated my skin with the needle. I turned white as a ghost and sweat flowed out of me, the nurse jumped back away from me and yelled "What are you on; I can't help you if you don't tell me what you?re on". I paid for and received my medical which had a large portion "blacked out. When I presented the medical records to the family court they accused me of the adulteration of the document. My medical records did not indicate that I tested positive for "Heroin, Cocaine and Crystal".
I was forced to settle my claim after three Neurologist Dr. Bruce Lasker, Dr. Robert Warren and Dr. Ford did not believe that I had a neuropathy (Dr. Lasker told my father behind my back that he thought that I was on drugs). When symptoms continued I started a Social Security case and started to study SCI's on the internet and I eventually obtained a copy of; Pathophysiology: Concepts of Altered Health States by Carol Mattson Porth and at the end of 2003, after a year of study, I knew that I had Autonomic Dysreflexia-Hyperreflexia (AD-H). I started seeing a primary doctor, Dr. Denise Parnell (the first that I would tell that I believe that I have AD-H) who had difficulty understanding the medical evidence that presented itself, but knew something was wrong and referred me to the Neurology department at UCSD Hillcrest.
When I showed up for the appointment my blood pressure and pulse rate were taken and the male nurse ran down the hall and returned still running with two nurses. When I asked "what was wrong" I was told "Your systolic pressure isn't even 70, your close to death". I asked that event be recorded but my BP was taken again and the second result was written down. When I tried to tell Dr. Swaili about my BP she shouted over me for 30 seconds and I took my medical records and walked out and asked for another doctor. Dr. Delaney said he would give me a chance to speak after an exam; instead he walked out stating "There's no neuropathy here". My second appointment at UCSD Hillcrest started with Dr. Desai stating "My opinion will not be any different from the other Doctor's". The third visit to UCSD Hillcrest was with Dr. Song and two medical students. They were shown by me, a medical document that had the results of a blood test that indicated that my Triglyceride level was 3,432. I was asked, ?Why are you showing me this". I replied "It's evidence of my SCI". The tremendous amount of effort that the four men in front of me would make to laugh at and ridicule me would only apply to their own humiliation. I was one hundred percent correct that liver enzymes and digestion would be affected by AD-H. Appointment four with Dr. Buchanan only resulted in him referring me to Dr. Marshall who said "I see no need for another appointment".
I learned that AD-H could also be diagnosed by an Orthopedic Surgeon with a Spinal Column Specialty and so I made an appointment with Dr. Douglas Chang. During the appointment Dr. Chang made a comment about my tongue moving back and forth laterally (indicates medullary neuropathy, brainstem injury) and also asked about my sudden inspiratory gasps. I was only less than two months into my condition when the first comment was made, "It's like your trying to breathe through a straw". Sudden Inspiratory Gasps are a "hallmark of Multiple System Atrophy". Combined with other symptoms it points to the Shy-Drager variant of MSA, where Autonomic Failure is dominate. Then Dr. Chang had me remove my shorts and lie on an examination table in the fetal position. He asked "Can you feel this"? I replied "Can I feel what"? Dr. Chang again asked "Can you feel this"? I again replied "Can I feel what"? For a third time Dr. Chang asks, "Can you feel this"? I replied, "I feel the tugging but I don't feel the point of contact". When I got home after the appointment with Dr. Chang my mother told me that I had blood dripping down my legs I went to the bathroom and with a handheld mirror saw that Dr. Chang had lacerated my sphincter three times.
The first Social Security doctor that I saw asked me to stand with my back to him and he shoved me in the lower back forcing me to catch myself, using the wall. The doctor said "spinal cord injury, yeah right" then walked out of the room. I could feel the AD-H episode coming on and lingered in the examination room but was told to leave by the nurse. I sat briefly in the waiting room and some patients began to ask if I was all right most likely because I was turning white. I knew if I stayed I would pass out so I walked the one block too my car and passed out from a Complex Stroke while trying to get my legs in and close the door. I regained consciousness and could see several people at the community garden (at Front St and Juniper St on Banker's Hill) were looking my way. I got the keys in the ignition and rolled down the windows and then sat upright and closed the door and then had a second complex stroke. It would be about twenty minutes before I would drive home.
I retained Binder and Binder after my Social Security was denied and they referred me to Dr. Michael Sukoff. Dr. Sukoff spent the first part of the appointment with a physical exam and then looked at my MRI's. I requested to be hooked up to a blood pressure pulse rate monitor and I would show changes when I stand up. Dr. Sukoff said it would not be necessary because he believed that I had an SCI. I waited approximately two months for the Doctor's Report before I called Dr. Sukoff's office, the first of several calls that yielded no result. It wasn't until Binder and Binder called that I got a Doctor?s Report that did not reflect Dr. Sukoff's confidence in my SCI that he displayed during the appointment. My Social Security was denied again and I made another appointment with Dr. Sukoff. This time I went in with a full bladder and my Blood pressure was high and my Pulse rate was slow. I then stood up and my Blood pressure dropped eighty points and my Pulse rate rose significantly. I then went to the bathroom to empty my bladder and then my Blood pressure dropped fifty points and my Pulse rate rose and then they stabilized as the same result was repeated. Dr. Sukoff realized that he had made a mistake and asked me to leave his personal office. I then talked to Dr. Sukoff's office manager Vicky stated "We can't fix this without admitting a mistake and exposing ourselves to a lawsuit".
After my diagnosis by Dr. Douglas Chang (11 -2006), Binder and Binder started a Social Security case on my behalf, without submitting my medical records. I repeatedly asked for them to submit my medical records but they refused. Before Social Security Judge Leland Spencer I argued against the Binder and Binder attorney saying I had the right to submit all of my medical records from February 2000 and she argued that I could not. I won and I terminated the relationship with Binder and Binder. The reason that they would not submit my medical records is they would become subject to a lawsuit if I won my Social Security with the same medical records and Dr. Chang's diagnosis as compared to the same medical records and Dr. Sukoff's report that were not successful the first time.
While walking at Wind and Sea beach (on forearm crutches) I was approached by a woman (who would later say her name is Catherine) who encouraged my rehabilitation because she used to be in a wheelchair. When I asked what her disability was she began to describe the same symptoms that I had. I asked her if she had AD-H and her jaw dropped. Around the same time as my accident, she had a snow skiing accident but tried to keep her job and pay her bills. She had one Transient Ischemic Attack (TIA) after another until she was too weak to walk. She had the same primary doctor as me (Dr. Parnell) and also had to figure out her AD-H on her own, but she was able to get social security with a proper diagnosis.
I was asked by a friend to go to the Ramona Animal Shelter to see if their lost dog was there and it was. During the paper work I noticed that one of the volunteers was constantly looking at me. Right before I left the volunteer walked up to me and asked me "What is the extent of your spinal cord injury". My response "I've been fighting with my doctors for over two years trying to convince them that I have a spinal cord injury". Her response "It didn't take me a minute to figure out that you have a spinal cord injury because you are clearly posturing, if your doctors are not treating you for a spinal cord injury then they don't know what they're doing, I recently retired from a career devoted entirely to spinal cord injury". She told me her name was Carol. I would later return to the Ramona Animal Shelter and leave my name and number with the manager in the hope that I could get more information. I was told that Carol was the head RN of the SCI ward at Loma Linda. I would receive a call from Carol and had a very productive conversation for about thirty minutes.
I made an appointment at Loma Linda Hospital with Dr. Dashtipour and would specify the need for a BP PR machine that was mobile on a cart and had the longest lead for the arm cuff as possible. It was the first thing that I asked for during the appointment and Dr. Dashtipour refused offering only the hand operated Sphygmomanometer that was mounted on the wall. If I stood up and crossed the examination room to take my BP PR, the event of Orthostatic Hypotension would be over before they could put the arm cuff on me. Dr. Dashtapore also refused to listen to the story about his former colleague and he made it on her list of "doctors that don't know what they're doing". After talking with an administrator about what had occurred I was sent a letter stating that they would only communicate with me by letter.
I went to Oceanview medical clinic where a security guard had an issue with me laying on the floor of the waiting room saying, "if you need to lay on the floor you should be in the ER". I spoke to Dr. Tudor about how sitting to long could aggravate my condition and cause a stroke, and I also requested to please don't let me linger in the waiting room at my next appointment. As I waited for my next appointment, I began to catch the doctor and other staff peaking around the corner to observe me. After one hour and ten minutes I walked to the exam rooms and found an empty one to lie down in. The doctor and a nurse tried to get me to leave the exam room, but I refused, waiting another hour and twenty minutes (2 1/2 hours total) until the doctor came into the exam room and declared "you obviously don't have what you think you have because you're still alive".
While I was driving, I was called on my cell phone by someone who said her name was Melissa from UCSD Thornton and she had some pre-MRI questions for me. I said only if it doesn't take long because it would aggravate my condition to drive and hold a cell phone to my ear at the same time. After several questions I was asked if I had ever done any grinding of metal without goggles on. I replied Most of the time I use eye protection. The question was repeated more aggressively and I responded that it doesn't matter because I have had MRI's with you before and several other places and have never had a problem. The response was even more aggressive and I said I don't want to be questioned anymore and hung up. When I showed up for the MRI, I was in the tube for more than an hour only to be told that the MRI machine was not working properly. And only one of the two MRI's was successful. I was told I would have to reschedule, which was done. Prior to the MRI, I went to the MRI facility to do my pre MRI questions in person. I spoke to the nurse with a female Doctor seated nearby listening to me tell about the phone call, while I was driving, that didn't go well because of how easily my condition gets aggravated. I was asked what condition do I have and I responded "Autonomic Dysreflexia-Hyperreflexia, it endangers my life by giving me strokes. I was then asked if it had something to do with a spinal cord injury and I replied "yes, that?s what the MRI is for". While I was driving to the MRI appointment I was called on my cell phone by the doctor who was sitting close by and listening to the conversation between me and the nurse. When I said I had already done my pre-MRI interview, I was told I would have to do it again or I wouldn't get the MRI. The aggression was over the top and I ended the conversation by hanging up. I went to complain about the incident to the head nurse Maria Alvarez and the result was their refusal to provide me any further treatment because I was upset with this malicious attempt to give me a Stroke. Provoking the fight or flight mechanism is a well-documented triggering mechanism of AD-H.
The Medical Board of California has refused to supply an independent Neurologist, saying I need to hire a Neurologist to back what I'm claiming. The next ten Neurologist that I would see and approximately ten more Neurologist that were contacted by phone would refuse to take my blood pressure and pulse rate because they did not want to be liable in case I had a Stroke or Cerebral Hemorrhage. The first was Social Security's own Neurologist while speaking to the Judge. The last Neurologist was Dr. Ruby Koshy, an associate of Dr. Dashtipour at Loma Linda, and it took one year to get an appointment with her. The first thing that I did during the appointment is to point to the sign on the door and said I need her too declare me disabled. Dr. Koshy responded "I don't know anything about your medical condition". I said "No problem I'll teach you". Dr. Koshy responded "I don't have enough time; I have a lot of patients". I responded "It only takes five minutes". Dr. Koshy responded "We don't have the resources here". I responded "All we need is the blood pressure, pulse rate machine that the nurse took my vitals with". I was denied the ability to prove how seriously AD-H endangers my life and Dr. Koshy refused to refill my prescription for my rescue medication Nifedepine. I was told to go elsewhere for treatment.
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