Have
you ever had the Pa Kettle Experience?
You may remember in the movies
of the 40’s or 50’s, Pa Kettle
sitting on the porch of his
falling down log country house
during the depression, the screen
door keeps slamming shut and
is falling off plus a loose
board under his rocker is making
a horrible noise and is about
to give way. The cause of the
noises are obvious and Ma Kettle
gets on his case to fix these
problems and he quietly continues
rocking in his chair saying
in a long very slow country
draw, “Guess I have got to fix
these one of these days, Ma” while
continuing to rock away on the
porch. Sometimes our neuropathy
symptoms are just an annoyance
and we ignore them for years.
We all have had a car with a noise that suddenly develops and we tolerate the noise or strange behavior of our car. Its cause is not so obvious so we refuse to deal with it. Then the noise or behavior of the car increases until you finally give in and take the car to the expert. You tell the mechanic what is going on, they do all the testing with fancy equipment, take the car for a test drive, then tell you “All the tests are normal”, charges you $300 and you leave. Then as you drive into your driveway back home and are about to park, what do you hear? Yes, the noise? Screaming would be allowed here and this is exactly what a neuropathy patient all too often experiences when going for help!
What is important here is to realize, when you take your neuropathy symptoms to the doctor and the doctor tells you all tests are normal, this only means that out of all the possible causes for your neuropathy, what they tested for is not one of the causes. This means that more testing should be done.
One of the best documents I have seen for testing was passed out at the 2010 Neuropathy Summit in Washington DC and was written by one of the speakers. It is titled Living with Neuropathy Diagnostic Tools and Symptom Assessment by Dr. Marc M Trelhaft MD. Dr. Norman Latov MD also produced a testing document that was published by The Neuropathy Association some years ago.
If a doctor does not know what tests to run or what is appropriate for a given neuropathy, it is unlikely that the correct test will be run. Nerve muscle biopsy is seldom needed according to many experts, yet this is what is so often done even at the risk of complications and residual problems for the patient. When I finally had a neurologist helping me in 2004, he was amazed that no one thought of doing a spinal tap to look at protein levels! No one thought of doing evoked forced potentials to check to see if the large medical history of autonomic neuropathy could be confirmed. No one thought of doing a skin biopsy to see if there was small fiber damage. Exposed to Agent Orange, a known carcinogen and toxin, no one thought to do the special blood work with dye, or a fat biopsy or a bone marrow biopsy to test for the abnormal protein or developing cancer that often occurs in veterans exposed to Agent Orange. If the doctor is unaware of what tests to run, how could he do the testing?
Again, we need more clinical training for neuropathy, more research with the development of better testing for diagnosis before damage is done to the nerves, better options for treatments and better tools for the neurologist who does care and is committed to the neuropathy patient.
We all have had a car with a noise that suddenly develops and we tolerate the noise or strange behavior of our car. Its cause is not so obvious so we refuse to deal with it. Then the noise or behavior of the car increases until you finally give in and take the car to the expert. You tell the mechanic what is going on, they do all the testing with fancy equipment, take the car for a test drive, then tell you “All the tests are normal”, charges you $300 and you leave. Then as you drive into your driveway back home and are about to park, what do you hear? Yes, the noise? Screaming would be allowed here and this is exactly what a neuropathy patient all too often experiences when going for help!
What is important here is to realize, when you take your neuropathy symptoms to the doctor and the doctor tells you all tests are normal, this only means that out of all the possible causes for your neuropathy, what they tested for is not one of the causes. This means that more testing should be done.
One of the best documents I have seen for testing was passed out at the 2010 Neuropathy Summit in Washington DC and was written by one of the speakers. It is titled Living with Neuropathy Diagnostic Tools and Symptom Assessment by Dr. Marc M Trelhaft MD. Dr. Norman Latov MD also produced a testing document that was published by The Neuropathy Association some years ago.
If a doctor does not know what tests to run or what is appropriate for a given neuropathy, it is unlikely that the correct test will be run. Nerve muscle biopsy is seldom needed according to many experts, yet this is what is so often done even at the risk of complications and residual problems for the patient. When I finally had a neurologist helping me in 2004, he was amazed that no one thought of doing a spinal tap to look at protein levels! No one thought of doing evoked forced potentials to check to see if the large medical history of autonomic neuropathy could be confirmed. No one thought of doing a skin biopsy to see if there was small fiber damage. Exposed to Agent Orange, a known carcinogen and toxin, no one thought to do the special blood work with dye, or a fat biopsy or a bone marrow biopsy to test for the abnormal protein or developing cancer that often occurs in veterans exposed to Agent Orange. If the doctor is unaware of what tests to run, how could he do the testing?
Again, we need more clinical training for neuropathy, more research with the development of better testing for diagnosis before damage is done to the nerves, better options for treatments and better tools for the neurologist who does care and is committed to the neuropathy patient.
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