Living with Neuropathy - Welcome to the group

John, again I want to thank you for recommending The Patient Revolution. I've read a few of the articles and have signed up for their newsletters, but I first watched the video of Dr. Montori speaking at the Lown Conference. It literally brought tears to my eyes. I was overwhelmed with emotion to know someone truly cares about patients and how medical care has almost completely become industrialized. I am so grateful to Dr. Montori and all who are involved with The Patient Revolution. You're probably tired of hearing stories from old people like me, who at 71 remember what good, caring healthcare was like, but at my age it boggles the mind and saddens me greatly to see how much it has changed. When I was a little girl my parent's doctor came to the house to see them on many occasions, and not because we lived in the country and it was what country doctors did. We lived in Austin, Texas. Not a big city then, but a growing one. Sometimes when he made house calls he brought his wife along. Almost 30 years later he and his wife attended my wedding. He was a brilliant diagnostician, and after I was old enough to leave my pediatrician he became my doctor. Whenever I had an appointment with him he always took the time to ask about what was going on in my life, and connect with me as a person. If you were in the hospital, after a full day of seeing patients in his office, he made rounds to see every patient, even if it was 10:00 at night when he got to your hospital room. There were no such things as hospitalists. The medical profession has come so far from that kind of personal, caring, hands-on way of practicing medicine. I started to realize sometime ago, and realize it more and more all the time, that I am having to fight for good doctors, and good healthcare. I am having to be my own advocate. My late husband was a doctor who was incredibly empathic with his patients, and I always remember him telling me that there are a lot of doctors who think MD stands for Major Deity. He was sadly right. So you can see how I am beyond grateful to know about The Patient Revolution. Many, many thanks for putting me in touch with it.

@maggie1960 I never get tired of hearing this type of story, especially from a youngster like yourself. At 79 I still look forward to learning more about my health and "partnering" with my doctor on decisions that impact my health. Of course I have lots to learn and I do have to remember who the doctor is 🙃and it's not Dr. Google. It helps me ask better questions which hopefully become better outcomes for my healthcare. If you like Dr. Montori, I think you will also like Dr. Amit Sood, Another Mayo Clinic doctor I had the opportunity to listen to at meeting a few years back. Loved his "A Very Happy Brain" video" -- https://youtu.be/GZZ0zpUQhBQ. He also gave a great TED Talk that you might find interesting -- Happy Brain: How to Overcome Our Neural Predispositions to Suffering: https://youtu.be/KZIGekgoaz4

I am 65 years old. I am not sure how long any kind of peripheral neuropathy may have started on me as I have been on Gabapentin and Tegretol for seven years for Trigeminal Neuroglia. I think that it has masked what is now noticeable. Last fall I noticed my feet tingling with some stabs in my ankles. Over the last 10 months or so the progression has gone up my legs and down my arms. There has been a few scary moments lately of waking in the morning to find the tingling in the middle of my chest, down my arms into my hands and even my jaw in front. It had me worried about my heart but my pulse and pulse oxygen was fine and no pain. Just the annoying prickly tingle as everything had been asleep. I want to go to a neurologist and am trying to. My initial symptoms at the time was just in my feet and ankles and I was denied to get into the office. I am afraid that if I say how things have progressed that it will be viewed as me making things up just to get an appointment. Any thoughts on what I should do?

Hi @artsyseven, Welcome to Connect. Symptoms can be a little scary sometimes. You mentioned you have been dealing with Trigeminal Neuralgia for seven years and now the condition has progressed. There is another discussion that you may want to join and read what others with TN have shared.

-- Trigeminal neuralgia: What helps stop the pain?:
https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-5/

Are you able to seek help at a teaching hospital or major health facility like Mayo Clinic?

Thank you for your reply. I apparently did not describe things very well. My Trigeminal Neurolgia is not worse. The neuropathy in my feet since last fall has progressed to being in my legs and arms, and has actually happened in my chest and jaw upon waking in the morning

I am 65 years old. I am not sure how long any kind of peripheral neuropathy may have started on me as I have been on Gabapentin and Tegretol for seven years for Trigeminal Neuroglia. I think that it has masked what is now noticeable. Last fall I noticed my feet tingling with some stabs in my ankles. Over the last 10 months or so the progression has gone up my legs and down my arms. There has been a few scary moments lately of waking in the morning to find the tingling in the middle of my chest, down my arms into my hands and even my jaw in front. It had me worried about my heart but my pulse and pulse oxygen was fine and no pain. Just the annoying prickly tingle as everything had been asleep. I want to go to a neurologist and am trying to. My initial symptoms at the time was just in my feet and ankles and I was denied to get into the office. I am afraid that if I say how things have progressed that it will be viewed as me making things up just to get an appointment. Any thoughts on what I should do?

Has anyone had success with tracing numbness and aching with severe stenosis of L4 and L5.
The Perineal nerve traces the leg and foot issues that I have. Hope that surgery on the back will
remove any restriction to the nerve in question. This is my diagnosis as doctors just throw up their
hands. Only patients know how and where the numbness and pain are located.