A Neuropathy Patient wrote: (Permission granted to use the story.)
“My neuropathy is caused by long term malabsorbtion of vitamin E. I saw a neurologist at Mayo Clinic, after years of “treatment” in my home town. The diagnosis was polyradiculoneuropathy with ataxia. Why do I not see more information about the lack of Vitamin E as a cause of neuropathy? I am ten years into diagnosis, but symptoms started about ten years earlier. I have 4 1/2 feet of small intestine removed and suspect there may be Cohn’s disease patient’s that develop neuropathy. “ Patient: Wanda Conatser
Good question and it could be asked of many types of neuropathy with different causes.
Dr. Latov mentions vitamin E deficiency as one of the many causes of PN in his book on page 22 and more specifically on page 25. Page 25 reads as if he had this patient in mind when he wrote it. Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won’t Stop from Amazon.com. List of other Books On Neuropathy.
Neurologists who are aware of this and test for other causes of neuropathy are growing daily. Hopefully the amount of clinical training for the diagnosis and treatment of neuropathy will continue to increase, but we are far from being there yet. These are brilliant men who are making simple errors simply due to the lack of diagnostic tools, as well as the lack of clinical training in the diagnosis and treatment of neuropathy. We have made some progress, but we still have a long way to go in the training up of neurologists in the diagnosis and treatment of the neuropathy patient.
Years ago, one such neurologist did the same thing that another well trained neurologist did to me in 2000, costing horrible increases in disability, because treatment was delayed another four years. The doctor tested the reflexes of the patient on that particular visit and found that the reflexes were not that bad. Every ounce of medical literature on the subject of reflexes notes that they are sometimes absent or diminished, but not always in various neuropathies. The same material notes that neuropathy patients, experience symptoms in a remitting and relapsing pattern and may be absent on a particular office visit. Now this does not sound like an endorsement for much of anything when it comes testing reflexes alone as a diagnostic tool. See article on Remitting and Relapsing Pattern.
These are brilliant doctors and often the teachers of neurology, yet they ignored what Walter Bradley, MD from University of Miami told me on a visit. Doctors need to look at the patient HISTORY, when all else fails and consider what other doctors have noted and not dismiss it! This simple change in behavior will help both patients and doctors as they seek to find solutions for neuropathy. Working with the Doctor. The good news is that we are making progress in these areas thanks to the work of many patients and the growing number of trained neurologists!
These issues make it imperative that we patients advocate to everyone including any doctor who might be willing to listen at every opportunity. I have done this by taking the Neuropathy Support Network poster to them, asking them to post it on the wall of their office for patients. I have purchased and given doctors a copy of Dr. Norman Latov’s book, asking them to refer patients to the Neuropathy Support Network and even gave them a copy of the FREE DVD “Coping with Chronic Neuropathy“.
So to every neuropathy patient, keep asking these questions and seeking answers and as you learn, share what you find with other patients and the doctors! You never know when you will find someone who is brilliant and secure enough to listen to what you share. Oh, and by the way, if you find a good doctor who is helpful and knowledgeable, why not let us know at the Neuropathy Support Network? Send the information to firstname.lastname@example.org