How am I going to engage in such a battle? Good question and you must begin, regardless of your education and background, believing that you can do it. All you need to do is learn how, one small step at a time.
STEP ONE: Find knowledge and resources in the information provided by patients and endorsed by a Clinical Neurologist Dr. Waden Emery III at What is Neuropathy.
Continue by reading the Frequently Asked Questions from neuropathy patients as the foundation for your practical knowledge.
Request a copy of and view the professional neurologist endorsed DVD “Coping with Chronic Neuropathy“.
Purchase and read the book Peripheral Neuropathy: When the Numbness, Weakness and Pain Won’t Stop by Dr. Norman Latov MD PhD and You Can Cope with Peripheral Neuropathy: Ideas from Patients by Mims Cushing.
From these resources you will find self empowerment and develop the skills to help other patients and use questions for getting help from and even teach medical professionals.
EXAMPLES: In the book by Dr. Latov’s he speaks of autonomic neuropathy (AN) and testing.
If your doctor dismisses any symptom of autonomic neuropathy without testing, you now know there are tests, so you say, “Are there any tests to be sure?”
If your doctor states that all the tests are normal when they completed the EMG, Nerve Conduct Test, and other blood tests, what did they not consider? See Small Fiber Neuropathy and the importance of the Skin Biopsy!
In the same book are general descriptions of most causes of neuropathy and types.
If you see what is going on in your experience with your symptoms in the book, you can ask, “What about celiac neuropathy,” or ______fill in the blank___________, if something else matches your symptoms and history. From where I sit after forty-three years with neuropathy, we must help stop the trend toward the dismissive diagnosis of “Idiopathic Neuropathy”.
STEP TWO: Using your experience, LOOK at the Frequently Asked Questions tab and read the answers. These are answers to which you can refer other patients.
During the eighteen years of support group work and internet guidance, these are the questions asked over and over again. Whether seeking insight into burning feet or chemotherapy or neuropathic pain or digestive problems or why I can’t move my arm or why do my feet not work, here is some insight.
If a veteran of Vietnam, Korea, Thailand, Guam, one of the ‘black water ships operating in Vietnam, or anyplace where Agent Orange was used, asks about their neuropathy and you know of the Guidance for Veterans Agent Orange and Peripheral Neuropathy, could you not send them there for help?
Or the fact that the Institute of Medicine has told the VA to approve significant Agent Orange Exposure for C123 Air Force Pilots who flew the contaminated C123’s after the war? Go look at it.
Did you know that this toxin causes all kinds of cancer, genetic problems for the unborn, chronic neuropathies and a diagnosis of idiopathic neuropathy may be one of the first indicators of these issues?
PRACTICAL EXERCISE – LESSON #1: A patient writes the following asking for your help:
“My feet burn and my hands feel numb. I was referred to a neurologist and told him I think I have neuropathy and he does some testing and states: ‘You do not have neuropathy.’ My primary care doctor says I am diabetic. What should I do?”
What would you tell them?
The next practical exercise on another type neuropathy will follow!
NOTE: Copyright 2010-15 Network For Neuropathy Support, Inc. dba Neuropathy Support Network.. This article may be reprinted or published for educational purposes as long as the printing or publishing is not for profit and acknowledgement is granted the author. Contact him at E-mail: gene@neuropathysupportnetwork.org
PATIENT TO PATIENT – Disclaimer: Patient to Patient articles are intended to be educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician.
