Dr. Norman Latov in his book Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won’t Stop in the opening statement of chapter 4 on “Evaluation and Diagnosis” states:
“People with neuropathy can often recognize it in others, as -if in a secret club. One man, for example was referred to the author after a friend with neuropathy saw him at a party wearing open sneakers with black tie attire. Everyone else thought he was eccentric, but his friend recognized that it was because his feet hurt. Common clues to the presence of neuropathy can include reports of bizarre sensations such as tingling or burning, a tendency to lean or keep the feet further apart for balance, taking off shoes whenever possible, such as under the table or when driving, and the presence of hammertoes.”
During the 1990’s I worked for a large organization and one particular board member always wore sneakers to every meeting and formal event. Later I was to learn that she indeed had neuropathy and feet that just were very painful. Yet this also reminds me of an important point.
While symptoms of neuropathy more often affect the feet and hands, (reasons explained in Dr. Latov’s book) the peripheral nervous system includes motor, sensory, and autonomic nerves and can affect every part of the body with only two exceptions, the brain and central nervous system. (See Dr. Latov’s book). Every time I was evaluated by the doctors at the VA they wanted to focus on the legs and feet even in 2010! When I tried to explain that the symptoms were all over my body and internally, with a hostile arrogance I was waved off as if this information was not relevant!
Here is the problem defined. While in 2015, we have made great progress from where we were even a decade ago, too few clinical doctors have the necessary clinical training for a complete understanding of the approaches to the diagnosis and treatment of neuropathy. While research has increased, yet few products get beyond phase 2 trials! Then there is the recent article about a product being worked on to help stop the transition of patients into wheelchairs, but it mentions only Multiple Sucrose’s while totally ignoring the types of neuropathy where this disability is even more common! Why? This is why we patients must be learners, teachers, supporters of research, and advocates for patients and doctors, even if some do not like this role for patients! I have been known to have a copy of Dr. Latov’s book and the DVD “Coping with Chronic Neuropathy“.
One of the best books which is full of such practical information that neuropathy patients have tried, is the book by Mims Cushing “You Can Cope with Peripheral Neuropathy“.
