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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
My points remain as stated. Physicians are people but like people many are not the best. Remember, the medical student who scores and performs the poorest but still graduates is still called doctor. One needs to be careful about selecting a doctor and this remains a problem since there are too few neurologists. Too many doctors do not read current literature, nor do they practice artful medicine where they look beyond the standard treatment. Accreditation requirements are minimal standards that a doctor must meet to meet continuing education for licensure. When the problems go beyond the standard gabapentin and pregab treatment an artful physician would look at the patient and discuss potential other approaches. BUT most will only perform the very least necessary. It is a catch 22 for physicians given lawsuits, but off label treatments are used all of the time. Thus cilastizol should remains an off label option for some.
Secondly many physicians do profit from all the testing. They are a part of a medical group. My general doc is part of a group and they have an independent lab, along with some cardiac testing. The profits from all of these tests are part of the group's income and adds to the physicians bottom line. The cost of medical treatment is a problem. In our system only those covered by insurance get the better treatment while those less fortunate are mostly overlooked. Where is our humanity for them? We pay way too much for medical care and physicians as a group look the other way since the current setup pays them very well. Again I generalize, there are always exceptions. Those I can admire!
Replies to "My points remain as stated. Physicians are people but like people many are not the best...."
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 don't really blame the doctors but do understand they are not all the same. They are people like us and come in a variety of personalities, some with people skills, some not so much. This is why I was so happy to meet Dr. Victor Montori at a Mayo Clinic Social Media webinar in Rochester, Minnesota a few years ago and had the opportunity to learn about an organization he was involved with to change our healthcare system. That made me a big fan of The Patient Revolution organization - https://www.patientrevolution.org/. I also had the opportunity to attend the Care that Fits 2024 event as a patient and really saw all of the work being done world wide to improve healthcare. Here's a list YouTube videos from the 2024 event - https://youtube.com/playlist?list=PLSWR1ylG_6JYeQl_ajndQ2jLCRcYkkqgI&si=f2_vtXYce6PU87Gn.
I'm starting to see it actually come to fruition in southern Minnesota with the HELPCare Clinic started by a Mayo Clinic retiree and his local doctor friend - https://helpcare.health/.