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#1 | ||
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"Thanks for this!" says: | stagger (01-27-2012) |
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#2 | |||
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Wisest Elder Ever
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The GTT is only high yield when doctors interpret it correctly.
Most ignore pre-diabetic levels, and lows in the long form, which indicate insulin resistance. Not all PN is diabetic. Some is metabolic --thyroid, and some toxic. I don't see toxic PN showing up on MRIs.... only spinal compressions. What kind of MRIs are these people getting? And no mention of autoimmune at all?
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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#3 | ||
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P.S. How much does a B12 test cost!?
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#4 | |||
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Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
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Dr. Zachary Smith Oh, the pain... THE PAIN... Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE. All opinions expressed are my own. For medical advice/opinion, consult your doctor. |
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#5 | ||
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Magnate
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--that annoy the living c%$p out of me. (And the dead c%$p, too.)
Fact is, MRI's are only going to be useful with very specific types of neuropathy--compressive ones, usually radiculopathies of the spinal nerve roots--anyway. While these are common, especially as people suffer the arthritic changes of age, they are only one broad area of neural symptom causes. There are hundreds of KNOWN causes of neuropathy, and likely a great many unknown ones (toxic, genetic, iatrogenic). The easy things to check for are diabetic/glucose intolerance, vitamin deficiency, collagen-connective tissue--vascular (anti-nuclear antibody) autoimmunites. But how many doctors know about deficiencies beyond B12 (if they even know that)? How many know about NON-ANA autoimmunites, such as gluten, monoclonal antibodies, antibodies specific to components of peripheral nerve, sarcoid? How many take a history of possible work or drug toxicities? (At least most seem to know that many chemotherapeutic agents are neurotoxic.) How many look well for infectious agents, such as West Nile, cytomegalovirus, Lyme? It is true that the work-up for neuropathy isn't standardized--UNLESS one is at a specialty center. At places like Washington University St. Louis, Jacksonville Shands, Cornell Weill, Jack Miller in Chicago, University of California San Francisco, Massachusetts General, and Johns Hopkins, the protocols are very similar, with variations made depending on symptom location and presentation. But all use a close analogue of the Latov/Quest serological protocol: http://www.questdiagnostics.com/hcp/...eralNeurop.htm and the Poncelet algorithms: http://www.aafp.org/afp/1998/0215/p755.html The fact that neuropathy causes are so varied and often hard to diagnose--at least a quarter of cases, even with these tests, remain stubbornly "idiopathic"--makes me think that a little more continuing education is in order. |
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"Thanks for this!" says: | adelina (01-27-2012), echoes long ago (01-27-2012), malawigirl08 (01-28-2012), mrsD (01-27-2012), stagger (01-27-2012) |
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#6 | ||
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My first neuro did send me right away for a brain scan, but that was to rule out MS which runs in my family. MRI's of my spine were on record as I had had back surgery 9 years earlier for sciatica due to two ruptured discs, and consequent arthritis of the spine which only flares up rarely.
Johns Hopkins re-did all the usual bloodwork including one of the Athena genetic tests for HNPP as I do have pinched nerves, and a two hour gtt. Blood tests showed nothing, but I was offered further Athena testing to try and determine which variant of CMT 2 it might be, as well as a spinal tap. I had a lengthy EMG /NCS and a skin biopsy at Hopkins as well. I refused further testing as it was likely to be unproductive, the neurologist there agreed with my decision. My condition is moderate to severe now, and slowly deteriorating, but there is no treatment, regardless of the findings. I think that many people want as many tests as possible and find it difficult to be at peace with the idea that there is no treatment. I am not speaking of the many neuropathies that can be improved through lifestyle choices, but of those that are hereditary, which includes many described as idiopathic. The quest for a diagnosis can come to resemble the quest for the holy grail. Modern medicine has encouraged us all to believe that they always have an answer. |
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#7 | ||
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I had Dx idiopathic neuropathy and expensive, useless tests and seem to have figured out much of the cause myself. I get outraged as well when I see the suffering people experience with PN, and I always wonder if some could be helped if Drs just took the time to really explore what was going on instead of ordering a test to rule out common disorders and then slapping on the idiopathic label.
Judi |
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#8 | ||
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