looking for a neurologist suffering from epilepsy

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I have complex partial epilepsy and interictal psychosis. I am a healthcare worker. I see too many people complaining about their neurologists and not understanding their disease. At a 2% incidence in the general population there MUST be a neurologist somewhere on this planet who has epilepsy and is willing to talk about it. Does Neurology need a wake-up call about it bad treatment of patients or am I simply one of the millions of "epileptics" who need to change my work and life outlook? Or worse: am I imagining all this (tip: look at the contents of epilepsy blogs)?

Comments

Re: looking for a neurologist suffering from epilepsy

Submitted by phylisfjohnson on Fri, 2010-04-16 - 11:23

Antoin, attached is a Comprehensive list of GOOD Neurologists, Epileptologists, Neurosurgeons, and Pediatric Docs compiled by forum members of www.epilepsyfoundation.org/efforums who have had positive experiences with docs over the years. This list is based on personal recommendations and, of course is purely subjective. But I thought it might be helpful for anyine looking for a good Neurologist…Epileptologist…Neurosurgeon…or Pediatric Doctor.

The list is organized alphabetically by state... http://my.epilepsy.com/node/985817 Phylis Feiner Johnson www.epilepsytalk.com

Antoin, attached is a Comprehensive list of GOOD Neurologists, Epileptologists, Neurosurgeons, and Pediatric Docs compiled by forum members of www.epilepsyfoundation.org/efforums who have had positive experiences with docs over the years. This list is based on personal recommendations and, of course is purely subjective. But I thought it might be helpful for anyine looking for a good Neurologist…Epileptologist…Neurosurgeon…or Pediatric Doctor.

The list is organized alphabetically by state... http://my.epilepsy.com/node/985817 Phylis Feiner Johnson www.epilepsytalk.com

Re: looking for a neurologist suffering from epilepsy

Submitted by antoinettetjie on Mon, 2010-04-19 - 16:16

Dear Phylis

Thank you so much for your concern!

No problem, at the end all is subjective: who can say the blue that I see is as blue as the blue you see? Even to start to sort out such a question scientifically means to keep the subjectivity in mind in a positive manner or you will loose your audience (and subject!). But when it comes to treating a patient with a psychiatric condition, Neurologists comes out worse amongst all the doctors.

It is generally agreed in Medicine that combinations of problems are handled with the more "medical" problem given priority since it has a negative influence on the psychiatry. This would mean that the psychiatric condition of a patient should not interfere with the diagnosis and treatment of epilepsy.

Further, if a colleague of a lawyer requires legal assistance, only the best is provided at cost price. But in medicine, ill personnel are treated like dirty linen. In Neurology even worse. It is already taking me 16 years to receive a final diagnosis! I am really looking for someone in the same boat as me. I have heard about a Neurologist who wrote about her treatment when she suffered a stroke. I have not heard of a Neurologist who suffers from epilepsy. If you half the incidence in the general US population, there must be one for every 100 practitioners, but they are sooooo quiet.

I would really like to communicate with such a person, because myprofessional field, Neurophysiology, particularly predisposes me to information that makes the differential diagnosis with purely psychiatric disorders difficult. It is as if people believe I can create the electrical activity on my scalp willingly! Even after several conclusive EEGs, the fact that AEDs are very helpful for the complete picture, and other such information, the least of it from a very good Psychiatrist, the diagnosis of epilepsy is still doubted because of my profession. There should be a warning for intending practitioners that they cannot expect any good support from Neurologists if they develop psychiatric problems due to epilepsy. Even though I am much more scientifically oriented and inclined than any Neurologist I have met in the past 24 years since I enrolled!

I would love to create a Internet support group specifically for such people, if I can find more. A place where we can share with each other without the risk of exposure. I think the pressure from healthy Neurologists are probably sufficient to result in immediate withdrawal from the medical profession, but I would like to be otherwise convinced, over and above having someone to e-mail once in a while aboutsuch unique problems.

I wish I can get better for long enough to change my profession. The epilepsy already derailed studies in Law. I am currently trying ceramics and art, but AEDs can kill creativity. And the psychosis make me mistrust my judgement of others' expectations of what is beautiful.

BTW, I am about 30 000 miles from the nearest doctor on your list on the other side of the globe! The Internet is a great source for international communication!

Kind regards,

Antoinette

Dear Phylis Thank you so much for your concern! No problem, at the end all is subjective: who can say the blue that I see is as blue as the blue you see? Even to start to sort out such a question scientifically means to keep the subjectivity in mind in a positive manner or you will loose your audience (and subject!). But when it comes to treating a patient with a psychiatric condition, Neurologists comes out worse amongst all the doctors. It is generally agreed in Medicine that combinations of problems are handled with the more "medical" problem given priority since it has a negative influence on the psychiatry. This would mean that the psychiatric condition of a patient should not interfere with the diagnosis and treatment of epilepsy. Further, if a colleague of a lawyer requires legal assistance, only the best is provided at cost price. But in medicine, ill personnel are treated like dirty linen. In Neurology even worse. It is already taking me 16 years to receive a final diagnosis! I am really looking for someone in the same boat as me. I have heard about a Neurologist who wrote about her treatment when she suffered a stroke. I have not heard of a Neurologist who suffers from epilepsy. If you half the incidence in the general US population, there must be one for every 100 practitioners, but they are sooooo quiet. I would really like to communicate with such a person, because myprofessional field, Neurophysiology, particularly predisposes me to information that makes the differential diagnosis with purely psychiatric disorders difficult. It is as if people believe I can create the electrical activity on my scalp willingly! Even after several conclusive EEGs, the fact that AEDs are very helpful for the complete picture, and other such information, the least of it from a very good Psychiatrist, the diagnosis of epilepsy is still doubted because of my profession. There should be a warning for intending practitioners that they cannot expect any good support from Neurologists if they develop psychiatric problems due to epilepsy. Even though I am much more scientifically oriented and inclined than any Neurologist I have met in the past 24 years since I enrolled! I would love to create a Internet support group specifically for such people, if I can find more. A place where we can share with each other without the risk of exposure. I think the pressure from healthy Neurologists are probably sufficient to result in immediate withdrawal from the medical profession, but I would like to be otherwise convinced, over and above having someone to e-mail once in a while aboutsuch unique problems. I wish I can get better for long enough to change my profession. The epilepsy already derailed studies in Law. I am currently trying ceramics and art, but AEDs can kill creativity. And the psychosis make me mistrust my judgement of others' expectations of what is beautiful. BTW, I am about 30 000 miles from the nearest doctor on your list on the other side of the globe! The Internet is a great source for international communication! Kind regards, Antoinette  

Dear Phylis

Thank you so much for your concern!

No problem, at the end all is subjective: who can say the blue that I see is as blue as the blue you see? Even to start to sort out such a question scientifically means to keep the subjectivity in mind in a positive manner or you will loose your audience (and subject!). But when it comes to treating a patient with a psychiatric condition, Neurologists comes out worse amongst all the doctors.

It is generally agreed in Medicine that combinations of problems are handled with the more "medical" problem given priority since it has a negative influence on the psychiatry. This would mean that the psychiatric condition of a patient should not interfere with the diagnosis and treatment of epilepsy.

Further, if a colleague of a lawyer requires legal assistance, only the best is provided at cost price. But in medicine, ill personnel are treated like dirty linen. In Neurology even worse. It is already taking me 16 years to receive a final diagnosis! I am really looking for someone in the same boat as me. I have heard about a Neurologist who wrote about her treatment when she suffered a stroke. I have not heard of a Neurologist who suffers from epilepsy. If you half the incidence in the general US population, there must be one for every 100 practitioners, but they are sooooo quiet.

I would really like to communicate with such a person, because myprofessional field, Neurophysiology, particularly predisposes me to information that makes the differential diagnosis with purely psychiatric disorders difficult. It is as if people believe I can create the electrical activity on my scalp willingly! Even after several conclusive EEGs, the fact that AEDs are very helpful for the complete picture, and other such information, the least of it from a very good Psychiatrist, the diagnosis of epilepsy is still doubted because of my profession. There should be a warning for intending practitioners that they cannot expect any good support from Neurologists if they develop psychiatric problems due to epilepsy. Even though I am much more scientifically oriented and inclined than any Neurologist I have met in the past 24 years since I enrolled!

I would love to create a Internet support group specifically for such people, if I can find more. A place where we can share with each other without the risk of exposure. I think the pressure from healthy Neurologists are probably sufficient to result in immediate withdrawal from the medical profession, but I would like to be otherwise convinced, over and above having someone to e-mail once in a while aboutsuch unique problems.

I wish I can get better for long enough to change my profession. The epilepsy already derailed studies in Law. I am currently trying ceramics and art, but AEDs can kill creativity. And the psychosis make me mistrust my judgement of others' expectations of what is beautiful.

BTW, I am about 30 000 miles from the nearest doctor on your list on the other side of the globe! The Internet is a great source for international communication!

Kind regards,

Antoinette

looking for a neurologist suffering from epilepsy

Comments

Re: looking for a neurologist suffering from epilepsy

Submitted by phylisfjohnson on Fri, 2010-04-16 - 11:23

Re: looking for a neurologist suffering from epilepsy

Submitted by antoinettetjie on Mon, 2010-04-19 - 16:16

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