My Neuropathy

by David Mendosa Patient Advocate

A few days ago when I finally was able to see a neurologist for the headaches that started four months ago, the first part of his examination was of my feet. I had heard of referred pain, but this seemed extreme to me, and I told him so.

The doctor replied that he would get to my head. In the meanwhile he gave me a complete examination. He used a tuning fork, similar to what musicians use. I could feel it as he went down my legs. But when he got to each of my feet, I felt nothing.

Then he worked down my legs to my feet with the side of a pin. Again, my feet I had no sensation.

He told me that I had peripheral neuropathy. And I could see it for myself. None of my other doctors had ever told me that before.

Since my diabetes diagnoses in February 1994, this was the first complication that I know I have. Neuropathy is the most common complication of diabetes. The National Diabetes Information Clearinghouse says that between 60 and 70 percent of us have one form of neuropathy or another.

Maybe I was in denial. But I told him that Dr. Richard K. Bernstein, the author of Dr. Bernstein's Diabetes Solution, says that he reversed his neuropathy and we can too.

Not surprisingly, my doctor disagreed. Few people are able to reverse any form of neuropathy, probably because they aren't able to reduce their blood glucose levels enough.

If our blood glucose levels have been elevated for years, as Dr. Bernstein said on one of his recent webcasts, we may have autonomic neuropathy, which is the actual destruction of nerves causes. If our neuropathy is autonomic, the nerves have to regrow. That takes time, but isn't impossible.

"In a young, healthy non-diabetic, nerves regrow at the rate of a millimeter a day," Dr. Bernstein explained. "So to get from the tip of your toe to your spine might be one meter -- a thousand millimeters. That would be a thousand days, and if you were in poor health and older, it might be 2000 days."

I am in good health, but at age 73 I qualify as a senior citizen. So it may take me 2000 days of extremely good control for the nerves to regrow. That's about 5 1/2 years.

Now that I am following a very low-carb diet, my most recent A1C was 4.8 percent. But only in the past 2 1/2 years, shortly after I started taking Byetta -- has my A1C been consistently below 6.0 -- the normal level.

This means that I wasn't controlling my diabetes well enough for the first 13 years after my diabetes diagnosis. And for perhaps 10 years before my diagnosis, if my experience was typical, I probably had diabetes and high blood glucose levels too.

Just as it took me years of discipline to get down to a low normal weight, I expect that I will need to take several more years of extremely tight control to reverse the peripheral neuropathy that the neurologist told me that I have. Then, I expect that the poor circulation I already knew that I had in my feet will be a lot better, and I will no longer need to wear socks to bed to keep warm.

Meanwhile, my neurologist did eventually get to my head. He ruled out migraine as the cause of my headaches, because my symptoms didn't fit. My primary care physician had ruled out a brain tumor on the basis of the CAT scan that he had ordered immediately. Then, an ear, nose, and throat specialist ruled out sinus or nasal polyps after examining me.

But the neurologist suspected that I might have an aneurysm and immediately ordered an MRI and MRA with and without contrast. This Friday I got the results back, and fortunately they ruled out this serious cause.

A friend told me this morning that doctors have established 150 causes of headaches. Only 145 to check out now

Meanwhile, my headaches are getting much shorter and less severe than they were four months ago. In fact, since I learned two days ago that I don't have an aneurysm, I have felt great. Maybe that's because the report lifted all that worry from my head.

I don't worry about my feet either. I know that I can continue to maintain tight control over my diabetes and expect to reverse my peripheral neuropathy in a few years. Watch for a positive follow-up report here in 2012.

David Mendosa
Meet Our Writer
David Mendosa

David Mendosa was a journalist who learned in 1994 that he had type 2 diabetes, which he wrote about exclusively. He died in May 2017 after a short illness unrelated to diabetes. He wrote thousands of diabetes articles, two books about it, created one of the first diabetes websites, and published a monthly newsletter, “Diabetes Update.” His very low-carbohydrate diet, A1C level of 5.3, and BMI of 19.8 kept his diabetes in remission without any drugs until his death.