First
and foremost, the primary contact
for the diagnosis and treatment
of peripheral neuropathy is
a Neuromuscular Neurologist.
However, the best approach is a multidiscipline approach with active involvement of all medical disciplines. This may include the doctor of internal medicine, the pain management physician, the podiatrist, the physical therapist, specialists in EMG and Nerve Conduct Testing, geneticists, radiologists, oncologists, hematologists, cognitive psychologists, cardiologists, pulmonologists, orthopedists, immunologists, surgeons, gastroenterologists, urologists and other medical professionals.
Ask yourself, what part of the body does not have peripheral nerves? The answer is the brain and the central nervous system. Look at the figure in the TAB for ABOUT NEUROPATHY and look at the drawing of the person on the right. Do you see the peripheral nervous system? It is everywhere outside the brain and central nervous system! Too often all we see in the ads are the feet! Do you know I have had doctors tell me that neuropathy does not affect the upper body, hands or face and it is only caused by diabetes, aids and alcoholism? Do you see the possible scope of the disease? If we develop better tools for the doctors and better treatment options through increased research, this would assist doctors treating patients instead of having frustrated patients and doctors?
Yet, patients must realize the limitations of the doctor, understanding that they will often find practical answers to some of the symptoms or problems they experience from patients who have walked the walk. But here is where you must read patient books from doctors (Dr. Latov’s book) so that you are able to sort through the patient suggestions and have your own treating doctor who you can consult on these patient ideas, just to be sure.
Russell L. Chin, M.D., Assistant Professor of Clinical Neurology and a Member of The Neuropathy Association has this to say in an article from The Neuropathy Association. "Given that so much of medical residency training is based on treating patients in the hospital, many of us emerge from our residencies not only sleep-deprived but more ignorant about “outpatient” neurology than we’d care to admit. As a result, my knowledge about the world of peripheral neuropathy (a condition seen mostly in the "outpatient" setting) came later--during my fellowship year after residency. As fate would have it, half of that year was spent at the Peripheral Neuropathy Center of Weill Cornell Medical College, which had just opened under the direction of Dr. Norman Latov. Under Dr. Latov’s mentorship, as well as that of Dr. Thomas Brannagan and Dr. Howard Sander, I learned about the many facets of neuropathy and was drawn to a career in this field. I sometimes wonder what professional path I would be on if I had graduated a year earlier.
I work with neuropathy patients on a daily basis and have become intimately familiar with the challenges they face. I often wish there was more I could do for those who continue to suffer. This is what drives my commitment to working with this community and our quest for more treatment options and cures. Sir Francis Bacon’s phrase, 'Knowledge is power,' are words many of us realize—whether we are a patient, friend, family member or health care provider—as we seek credible information and resources to help address this frustrating, and often mysterious disease."
If it were not for an informed caring patient, I would have stopped breathing and died years ago, when the infusion doctor did not understand dosing, product differences and infusion speeds. Conversely, if it were not for a research article from Dr. Latov’s work on IVIg, which I gave to the doctor who listened, I would have continued into a life threatening condition while doctors stared at me for not being a diabetic. PATIENT DOCTOR PARTNERSHIP!
If it were not for an informed patient my treatment with IVIg would have killed me by drowning until the patient suggested that I let the doctor know the problem was the rate of the infusion and the need for Lasix. I then changed doctors and told my new neurologist and current Neurologist Dr. Waden Emery what the patient said, he listened and we did it! PATIENT DOCTOR PARTNERSHIP!
If it were not for an informed patient I would have not known to build a frame over my body to stop the severe pain from the bed sheets when they touched my body. If it were not for an informed patient I would not have used a cane when I needed it, as the doctor and nurse actually sarcastically made fun of my use of the cane in 2002 and by this time I was so beaten down and confused I did not know what to do. When I asked another doctor why they had done this, he said, “Don’t know, but use the cane so you do not fall and break your neck.” PATIENT DOCTOR PARTNERSHIP!
When doctors brushed aside my complaints that were clearly autonomic neuropathy, it was my knowledge from my patients that helped me treat and not over treat the symptoms as later confirmed in statements in Dr. Latov’s book. PATIENT DOCTOR PARTNERSHIP!
Conversely, when a very knowledgeable neurologist’s sarcastically brushed aside my diagnoses in 2000 when he discovered that with compression I had strong reflexes, it was my knowledge from other doctors who taught me that sometimes reflexes are absent or diminished, but not always! PATIENT DOCTOR PARTNERSHIP!
A good doctor patient partnership and support from other patients are the solutions to the all too often failure to diagnose and treat, until research provides more answers and tools for diagnosis for neuropathy
However, the best approach is a multidiscipline approach with active involvement of all medical disciplines. This may include the doctor of internal medicine, the pain management physician, the podiatrist, the physical therapist, specialists in EMG and Nerve Conduct Testing, geneticists, radiologists, oncologists, hematologists, cognitive psychologists, cardiologists, pulmonologists, orthopedists, immunologists, surgeons, gastroenterologists, urologists and other medical professionals.
Ask yourself, what part of the body does not have peripheral nerves? The answer is the brain and the central nervous system. Look at the figure in the TAB for ABOUT NEUROPATHY and look at the drawing of the person on the right. Do you see the peripheral nervous system? It is everywhere outside the brain and central nervous system! Too often all we see in the ads are the feet! Do you know I have had doctors tell me that neuropathy does not affect the upper body, hands or face and it is only caused by diabetes, aids and alcoholism? Do you see the possible scope of the disease? If we develop better tools for the doctors and better treatment options through increased research, this would assist doctors treating patients instead of having frustrated patients and doctors?
Yet, patients must realize the limitations of the doctor, understanding that they will often find practical answers to some of the symptoms or problems they experience from patients who have walked the walk. But here is where you must read patient books from doctors (Dr. Latov’s book) so that you are able to sort through the patient suggestions and have your own treating doctor who you can consult on these patient ideas, just to be sure.
Russell L. Chin, M.D., Assistant Professor of Clinical Neurology and a Member of The Neuropathy Association has this to say in an article from The Neuropathy Association. "Given that so much of medical residency training is based on treating patients in the hospital, many of us emerge from our residencies not only sleep-deprived but more ignorant about “outpatient” neurology than we’d care to admit. As a result, my knowledge about the world of peripheral neuropathy (a condition seen mostly in the "outpatient" setting) came later--during my fellowship year after residency. As fate would have it, half of that year was spent at the Peripheral Neuropathy Center of Weill Cornell Medical College, which had just opened under the direction of Dr. Norman Latov. Under Dr. Latov’s mentorship, as well as that of Dr. Thomas Brannagan and Dr. Howard Sander, I learned about the many facets of neuropathy and was drawn to a career in this field. I sometimes wonder what professional path I would be on if I had graduated a year earlier.
I work with neuropathy patients on a daily basis and have become intimately familiar with the challenges they face. I often wish there was more I could do for those who continue to suffer. This is what drives my commitment to working with this community and our quest for more treatment options and cures. Sir Francis Bacon’s phrase, 'Knowledge is power,' are words many of us realize—whether we are a patient, friend, family member or health care provider—as we seek credible information and resources to help address this frustrating, and often mysterious disease."
If it were not for an informed caring patient, I would have stopped breathing and died years ago, when the infusion doctor did not understand dosing, product differences and infusion speeds. Conversely, if it were not for a research article from Dr. Latov’s work on IVIg, which I gave to the doctor who listened, I would have continued into a life threatening condition while doctors stared at me for not being a diabetic. PATIENT DOCTOR PARTNERSHIP!
If it were not for an informed patient my treatment with IVIg would have killed me by drowning until the patient suggested that I let the doctor know the problem was the rate of the infusion and the need for Lasix. I then changed doctors and told my new neurologist and current Neurologist Dr. Waden Emery what the patient said, he listened and we did it! PATIENT DOCTOR PARTNERSHIP!
If it were not for an informed patient I would have not known to build a frame over my body to stop the severe pain from the bed sheets when they touched my body. If it were not for an informed patient I would not have used a cane when I needed it, as the doctor and nurse actually sarcastically made fun of my use of the cane in 2002 and by this time I was so beaten down and confused I did not know what to do. When I asked another doctor why they had done this, he said, “Don’t know, but use the cane so you do not fall and break your neck.” PATIENT DOCTOR PARTNERSHIP!
When doctors brushed aside my complaints that were clearly autonomic neuropathy, it was my knowledge from my patients that helped me treat and not over treat the symptoms as later confirmed in statements in Dr. Latov’s book. PATIENT DOCTOR PARTNERSHIP!
Conversely, when a very knowledgeable neurologist’s sarcastically brushed aside my diagnoses in 2000 when he discovered that with compression I had strong reflexes, it was my knowledge from other doctors who taught me that sometimes reflexes are absent or diminished, but not always! PATIENT DOCTOR PARTNERSHIP!
A good doctor patient partnership and support from other patients are the solutions to the all too often failure to diagnose and treat, until research provides more answers and tools for diagnosis for neuropathy
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