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My lessons learned about idopathic non-diabetic peripheral neuropathy
Neuropathy | Last Active: Aug 3 9:35am | Replies (38)Comment receiving replies
I do not agree with many of your statements, which are factually incorrect, misleading or simply speculation. However, because this forum is for the benefit of PN patients, it is not appropriate for us to engage in personal disputes.
As you may have guessed, I am a physician and patient with PN. As such, I have had the "privilege" of having the best of care, and the ability to know the difference. I have also, in desperation, tried almost everything, after the "gabapentin and pregab" treatment route was not particularly helpful. As I have written before on this forum, the thing that helped the most was mindfulness training, which allowed me to develop a different attitude towards my disease. This training was suggested and arranged for by my neurologist, who is a professor at a well known medical school and hospital. The physicians I know are not against using alternative approaches or "artful medicine" if there is evidence that they may be efficacious and the benefit outweighs the risks. In the unhappy world in which PN exists, they are happy to accept anything that may work, as long as it does no harm.
As I said before, there is no current literature to support the use of cilastizol for PN, and, as with all medications (and many supplements) there are potential adverse side effects. It would not be covered by insurance. If there were a bad result, it would be a slam dunk malpractice suit.
I sense that you have several negative opinions about physicians I don't think promoting them here is helpful, as it it may encourage people to try unproven and/or expensive scams. For the newly diagnosed PN patient, the best approach is to see a board certified neurologist (who has, in fact, had years of training and many hours of continuing medical education and are required to be recertified periodically). There is a standard series of tests, after which a specific diagnosis is made (if possible) and then appropriate treatments are initiated. Since the initial treatments are rarely completely successful (nobody's fault), other treatments are tried, including holistic and other non traditional ones (as in my case). There is almost always something that will make the patient feel better.
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I have over 40 years of experience working with doctors educating them and have held 3 appointments in medical schools as adjunct faculty. My comments often are generalizations from those experiences.
1. There seems to be a moral gap/humanistic lacking component in a subset of those who I have helped to train. Our health care system is the most expensive in the world and yet clearly far from good to all. Physicians are like the fox guarding the chicken coup. Listening to physicians will not change this questionable system. I am part of a lucky group that can access quality care, but I deeply care for those who can't access care.
2. The American system seems to exclude what is learned in the rest of the world. Cilastizol for example is used by neurologists in Canada and Europe. It seems to help individuals with arteriole problems that are associated with PN. Essential oils are used in the Middle East with some success. But essential oils are relatively cheap and Big Pharma has not adopted their use in any meaningful way. Why has the government not sponsored research in this area? How can we as a country come up with cost effective treatments? What is done in other parts of the world?
3. I search daily in the medical publications primarily PubMed looking for good news on PN. It is generally fruitless with work on diabetes and chemotherapy induced PN being the focus. If you are not in that unfortunate group you are more than likely to be treated as though you are.
4. I continue to look for research on the usefulness of CBD and THC but there is very little. But we know that these substances are effective for many. Lessons learned are my personal experiences and it is good for others to share their insights and experiences.
5. As a physician you have had good experiences and it would be beneficial for individuals such as yourself to speak out and encourage others to benefit from your positive results in a way that others may also benefit from. And I agree with you that mindfulness (a change of attitude) is probably the only thing that one can control.
6. Physicians primary focus is on A)avoiding lawsuits and B) getting paid for service. Only after A & B can you schedule an appointment. Things are often rushed; patients can often feel uneasy about their interactions within this environment. We need to see improvements. Things cost too much and there is poor access with often many months before one can access a neurologist.
7. We can continue to seek alternatives that can work. I strongly suggest that there be some biochemistry basis for what is tried.
8. Change will only occur if enough people speak out and demand better solutions.