My lessons learned about idopathic non-diabetic peripheral neuropathy

I have hovered just below the prediabtics markers most of my adult life
Taught the diabetic diet. Ate well exercised routinely. but always fought weight gain Docs said just cut the ice cream. I didn’t eat ice cream. High blood pressure
Been complaining about foot pain for years- it was there- the beginnings — ignored. Told better shoes Lol I wasn’t explaining the right words
3 years ago. BAM A1c jumped. Pain levels increased.
What to do? Ate well.
Offered gabapentine— ha the drug of nightmares
Finally landed on low carb low fat high protein
A1c. Normal
But neuropathy on the move. Now in my calves
Magnesium helps. As does 1200 lipoic acid
I think I would rather have pain than numb. Numb says dead to me. That’s frightening
Metabolic syndrome. Diagnosis too late.
I hope you can walk on, my friend .

John - thank you for tempering my comments. I'll be quiet now. Going thru a bad patch with this stuff. S.

A “bad patch” is exactly what this forum is for! Keep talking - believe me, this group is listening and nodding.
I just politely fired my neurologist after 2 1/2 years. I am a nurse, and even though he was fresh out of residency and I was one of his first patients, I thought “I’ll give this a chance”. His lack of curiosity about strange symptoms and worsening neurological symptoms allowed me to be grossly over medicated for 18 months. That’s a long story, but UAB figured out what was happening. They have agreed to be my primary neurologist, even though it’s 2 hours away. Thank goodness for patient portals and telemedicine.
When working as a nurse, I was kind, concerned, reassuring - I broke my own rule by staying with a doctor who didn’t meet my personal standards, mainly out of convenience. Plus I was too sick from the over medication to make changes.
So yes, follow your instincts, because harm can be done. Your points have validity.

I agree with @julbpat, a "bad patch" is something we all can relate to and we can help each other get through the day. It helps when we can discuss the shortcomings of medical care and help other members navigate difficult medical conditions like neuropathy. I didn't mean to temper your comments but just wanted to offer some hope for a lot of us that have felt the same thing on our journey. I guess my own excitement for the Patient Revolution organization got the best of me. It offers me some hope for future generations of patients but a part me wants it in my own personal healthcare right now.

Has anyone tried Arialeif or is it a scam?

I am waiting for a call for a neurologist at UAB for an appointment. My neurologist was fresh out of school. Knew nothing. No suggestions about just basics
And yes I have stayed with Dr M even though he told me for years I just needed better shoes.
Harm was done.

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.

My neurologist had literally just completed his residency at UAB, and knew my neurologist there (who is the most wonderful physician I have ever had). He was excited about working in tandem with his Attending Physician from UAB. No such teamwork happened. I let it go on too long. Yes, harm was done to me too.

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.

Any chance you would share the name of your neurologist. I live in Florence Al The one at UAB. Thank you .