Burning feet and legs

@lexilulu - Here's an article from 2016 that might shed a little light on the topic.

"Is small fiber neuropathy fatal? -- When those deposits build up, peripheral nerves start to malfunction, and the patient experiences peripheral neuropathy. The disease eventually involves sensory, motor and autonomic nerves, and it is fatal.” --- The Fire Within - Johns Hopkins Medicine: https://www.hopkinsmedicine.org/news/publications/hopkins_medicine_magazine/features/fall-2016/the-fire-within

A supplement program of therapeutic levels of vitamins and minerals. Rather than me try to explain, suggest you go to " http://www.theprotocol525.com". The only PT that helped me is manual PT by a trained therapist who is willing to do all hands-on work focusing on adhesions, scar tissue and muscle knots. In my experience of 20 plus years, you have to search far and wide to find one. Hope this helps.

It makes me so mad that the two Neurologists I went to when I asked what to expect, they both said everyone is different. They would not give me any frame of reference! Even w/ that explanation, I feel like I need a dr to be able to explain it as things start to change & to be able to tell what’s going on w/ my body! What kind of dr could do this for me?

@lexilulu - Communication with doctors can sometimes be difficult but there are things we can do as patients to help. Then if I still had an issue with the doctor, I would do my best to find a doctor that listens and can help. There is a website that you might like to check out - The Patient Revolution - https://patientrevolution.org/. Here are a couple of links under the How We Revolt section that you might find helpful.

Tools for the Visit: https://patientrevolution.org/visit-tools
Communication Barriers: https://patientrevolution.org/barriers
Let's Talk About $: https://patientrevolution.org/cost

Hi John,

The only thing I got out of my first neurologist visit when I asked about my future was "PN kinda advances for10 years then stays about the same" . Has anyone else heard this?

Bless,

Rick

I can get really depressed as well. Need to try to take a break from trying to find a cure for me on the internet. I’m doing everything I possibly can, including walking/aerobic exercise. It kills my feet, but soon after they are better for a longer period of time than usual before they’re bright red & burning again. I also fear being in a wheel chair some day. I’m scared to death & obsessed w/ trying to find help. I need to take a few steps back, so it doesn’t get me so down. Good luck to you!

Hi Rick, I heard a variation of what you were told 🙂 I've only seen the neurologist who diagnosed me with idiopathic small fiber PN and since I have no pain but only numbness, he basically told me there were no drugs that help the numbness and to let him know if and when it gets worse. This is actually what started my journey to learn as much as I can about my condition and any possible treatments that might help. The funny part is that I avoided seeking a diagnosis for 20+ years until the numbness progressed to just below the knees. I had discussed the numbness with several PCPs over the years and they all said there were tests they can run to determine if the cause is nerve damage but when I asked if it is nerve damage what can you do, the answer was always nothing. So I really wasn't surprised when I finally wanted to know and then had the tests and was diagnosed. I pretty much got the same answer from the neurologist.

I started my search and found Connect and my learning journey began. I also found the Minnesota Neuropathy Association and regularly attended meetings until they finally had to disband. What really got me to look into cellular nutrition as a possible answer for my condition was reading the story of Dr. Terry Wahls - https://terrywahls.com/about/about-terry-wahls/.

I shared my neuropathy story in another discussion here https://connect.mayoclinic.org/comment/310341/ and I think so far I've been able to slow or possible stop the progression of my neuropathy. At least it doesn't seem to be any worse than when I was diagnosed in 2016 and it's actually a little better since it feels like the numbness is primarily in my feet and just above the ankles and not just below the knees. I haven't bothered to have any more tests to confirm if it's gotten better so it's subjective on my part.

I'm currently trying to learn a little more about the metabolic syndrome and how it can affect many different conditions as I think it seems like I fit the criteria and I had always been labeled with prediabetes by my primary care docs.

Hi John,

My journey with a neurologist is just beginning. After 6 years of progressing numbness and being a bit unsteady, I'm hoping to find something (like the J. Hopkins 2016 study) to provide some hope. Now considering the 525 protocol. As an engineer, I wish there was some data to support any of these theories.

Bless,

Rick

I have had peripheral neuropathy for 16 years and it keeps getting worse. That’s what I was told would happen.

Hi Sport,

Sorry to hear about your journey. Everyone is different with this disease. I'm finding that out for sure. My neurologist may have been giving me the "feel good" response. What symptoms do you have and are you still able to walk, drive, etc? I pray for you and everyone who is on this journey.

Rick