NEUROPATHY SUPPORT NETWORK LLC
FORT LAUDERDALE, FLORIDA

Helpful Articles Russell L. Chin, M.D., Assistant Professor of Clinical Neurology and a Member of The Neuropathy Association has this to say in an article from The Neuropathy Association. “Given that so much of medical residency training is based on treating patients in the hospital, many of us emerge from our residencies not only sleep-deprived but more ignorant about “outpatient” neurology than we’d care to admit. As a result, my knowledge about the world of peripheral neuropathy (a condition seen mostly in the “outpatient” setting) came later–during my fellowship year after residency. As fate would have it, half of that year was spent at the Peripheral Neuropathy Center of Weill Cornell Medical College, which had just opened under the direction of Dr. Norman Latov. Under Dr. Latov’s mentorship, as well as that of Dr. Thomas Brannagan and Dr. Howard Sander, I learned about the many facets of neuropathy and was drawn to a career in this field. I sometimes wonder what professional path I would be on if I had graduated a year earlier. I work with neuropathy patients on a daily basis and have become intimately familiar with the challenges they face. I often wish there was more I could do for those who continue to suffer. This is what drives my commitment to working with this community and our quest for more treatment options and cures. Sir Francis Bacon’s phrase, ‘Knowledge is power,’ are words many of us realize—whether we are a patient, friend, family member or health care provider—as we seek credible information and resources to help address this frustrating, and often mysterious disease.” If it were not for an informed caring patient, I would have stopped breathing and died years ago, when the infusion doctor did not understand dosing, product differences and infusion speeds. Conversely, if it were not for a research article from Dr. Latov’s work on IVIg, which I gave to the doctor who listened, I would have continued into a life threatening condition while doctors stared at me for not being a diabetic. When doctors brushed aside my complaints that were clearly autonomic neuropathy, it was my knowledge from my patients that helped me treat and not over treat the symptoms as later confirmed in statements in Dr. Latov’s book. PATIENT DOCTOR PARTNERSHIP! A good doctor patient partnership and support from other patients are the solutions to the all too often failure to diagnose and treat, until research provides more answers and tools for diagnosis for neuropathy. In the course of getting help with your neuropathy and dealing with a nightmare of symptoms, loss of purpose, loss of job, loss of meaning, changing relationships with family and friends, you may find yourself desperately in the need of help. Please do not even hesitate to ask for help from a trained Psychologist. They will help you find your way through the maze of emotions that you and/or your family are experiencing. For those who may at times think life is not worth living with neuropathy, I am reminded of what Dr. Berman in his book (see resources tab) states, “Suicide is a permanent solution to a temporary problem!” The temporary problem is often the loss of purpose, loss or change in relationships and loss of meaning for the neuropathy patient. If you discovered purpose, meaningful relationships and meaning in your life once, however difficult it may seem, you can rediscover them again. Do not hesitate to ask for help, it is there for you. Helpful Articles Dr. Latov reports that some chemotherapy treatments cause neuropathy and others don’t. Some chemotherapy products while causing neuropathy, yet after treatment is completed, the neuropathy symptoms remit over time. In other products the neuropathy does not remit. Dr. Latov recommends that patients facing chemotherapy be tested to ensure that they do not have other causes for any potential neuropathy. Some types of peripheral neuropathy can be cured, yet most cannot. However, many patients can be helped. Therapy is directed at treating the underlying disease and at improving the symptoms with the right medications. An experienced neuromuscular neurologist can help patients feel more comfortable, and their quality of life can be greatly improved. But it is extremely important to get to an experienced neurologist as soon as you notice the symptoms before the disease has a chance to cause severe permanent damage. The fact is, we desperately need more research! Where can I go to obtain reliable help for, and an understanding of, my neuropathy? Then learn all you can about peripheral neuropathy. You do not need to become a doctor or a neurologist as that takes years of training! Look at the Resources TAB in this web site and obtain the books by Latov, Cushing and Berman. Then make them your medical Bibles. They are gold mines of information and the one by Cushing will help you learn of things available to the patient given the many challenges of neuropathy. A patient support group is another place where you find support, information and ideas. It was a patient who helped me solve issues with my infusion from their own experience. Sharing these with my doctor, we solved the problems! It was in the books and at the Association that I learned about a trial of gamma globulin, endorsed in an article by over 20 neurologists and this was the life saver. I shared this with my neurologist and it worked! Some neuropathy solutions are not even this complex and you may find yours in the books! Read, learn and then share with your doctor. Then the last thing is to avoid the “snake oil sales”. Whenever a disease is difficult to diagnose and treat, the “snake oil sales” abound. Some of the ideas and products that have been developed may help and may be worth exploring. Look for the exaggerated overstated claims. If it sounds too good to be true, it is too good to be true! For example, this product cures all neuropathies. This product restores all nerve function and prevents all neuropathies. If you have read Dr. Latov’s book understanding Peripheral Neuropathy and the causes, you will see the words that should alert you to false, overstated or misleading claims.