Happy to find this group as I believe that education seems to be a priority here. Support is wonderful, but at this point I am all about learning and understanding what is going on in my body, why it is happening and what should I be doing about it.
My neuropathy story is almost identical to John's. Neuropathy began five years ago (at age 66) with mild numbness in toes, then feet, ankles and now working up to the knee. Never consistent; severity and location varies day to day. More annoying than painful.
I have had enough testing done to be "diagnosed" with Polyneuropathy and my neurologist stated that he believed it would not progress. He recommended B1, D3 and B12 supplements and said I could come back anytime! I can't just let it be at that. I NEED to know! I have many questions and so, the research began. After a few leads from this group, especially Dr. Matthew Jensen's YouTube videos, I have a better understanding of my particular situation, some possible thoughts relating to cause and a better understanding of what might or might not be done about it.
My neuropathy? I have a Peripheral Neurological Disorder resulting in Polyneuropathy (nerves: currently manifesting as numbness in the lower limbs) and some minor indications of Myopathy (muscles: manifesting as slight loss of motor control in the hips.) I do not know to what extent this is Axonal loss/damage or Demyelination. I'd like to know how that is determined as it may give me a better understanding as to cause and outlook.
Background: No family history of neuropathy, but definitely diabetes and cardiovascular disease. My active and healthier lifestyle seems to have prevented those. I have always had high cholesterol and arthritis. Never treated either with medication. But, when the hips were far gone I had them replaced, five years ago! My neurologist seems to feel that was the culprit, but there are a few other possibilities including a rear-end car accident shortly after the hip surgeries. And maybe my 20+ years of high cholesterol??? What about blood sugar levels, though I'm not diabetic??? Vitamin and/or mineral deficiencies that have been tested??? I would like to dig a little deeper because there may be some contributing factors and those may determine what if anything I can do to stop the progression (if there is going to be any) of this disorder.
As for "treatment" I have tried many approaches over the last 3-4 years, giving each it's dedicated time and effort, but not always in the most organized manner. I've done plenty of physical therapy, TENS, vibrations plates, some minor attempts at spinal decompression, daily exercise, and of course the classic supplements including B1, B12, D3, Alpha Lipoic Acid, Biotin, fish oil, turmeric and will be adding Magnesium and Aloe Vera (for the cholesterol) this week. I also experimented with doing absolutely nothing for a few months.
Have I seen changes? Yes, daily; but completely random. Sometimes better, sometimes worse, Sometimes here, sometimes there! Nothing seems to have made a permanent change in the condition for good or bad. It clearly is "progressing" since five years ago it was only at my toes and now sometimes I feel numbness in my calves and shins. But, will that continue? Yes, or no, I'd like to know WHY.
So, onward I go, learning and looking for answers. But, trying not to obsess over it!