Looking to connect with people who have non-diabetic neuropathy

What happened to you has happened to me and it's as if I wrote your post. My neuropathy is from Lyme disease. My Lyme doctor has 1,200 patients and 80% have neurological issues. I'm doing 3 antibiotics a day and IVIG and seeing a little improvement.

@graysea I like your positive self talk and personal mantras. It sounds to me like you are doing a pretty good job despite some bumps in the road and will persevere.

I'm sorry you were so unlucky. Having a support system as you do with your husband and doctor are a blessing.

Here is one of my favorite mantras...

"We cannot direct the wind
But we can adjust the sails."
~ Dolly Parton

I adopted it right after graduation from the Mayo Pain Rehab Center. Mindset is everything....you got this!

@graysea

Thanks! I got tested for Lyme at the beginning and is was negative.
Hmmm.... I see this just now Googling :"Lyme disease is known to inhibit the immune system and 20-30% of patients have falsely negative antibody tests". Maybe I should get tested again.

Thanks! I got tested for Lyme at the beginning and is was negative.
Hmmm.... I see this just now Googling :"Lyme disease is known to inhibit the immune system and 20-30% of patients have falsely negative antibody tests". Maybe I should get tested again.

I posted here somewhere else before, just updating....
I have neuropathy in the feet: strictly numbness, no tingling or other.
It started all of a sudden in the left foot, 3 years ago.
Detail: it did not start in the toes, it started in the whole front of the foot (mid point forward) all at once.
A year later it moved to the right foot.
It is gradually getting worse in both feet.
B12 is low but I take shots for it.
Fasting glucose is in low 100s, so a bit high, but A1C is always fine.
No alcohol, smoking or drugs.
I do have an issue in my lower back, but people looking at MRI do not thing that is an issue.
I had a doctor do a spinal epidural anyways -- he used anesthetic not cortisone (he was reluctant on the cortisone) which had no effect at all. Maybe try cortisone?
Been to 2 neurologists, both conclude unknown cause.
PT I went to thinks it is the back, because one visit he worked on my back and it made it better -- but in other visits, the same work had no effect, so inconclusive.
My regular doctor says circulation is fine.
If it matters, I have that thing where if I bend my elbow for a while, my hand goes numb.
But permanent numbness is only in the feet.
Only drug I take is lisinopril for high blood pressure (which is not very high)
I was put in a statin a year before this started -- which makes me wonder, as I know that can be a cause? -- but I stopped back then because cardiologist said I don't need it.
I walk 2 hours a day, love walking.
I can live with it, but worry it will get worse.
Not sure what else to do.

I posted this comment also, but after much research I found a study that got good results using a combination of 300 mg of CoQ10 and 20 mg of PQQ daily. It has made a huge difference for me. Not an overnight cure, but could help prevent further progression.

Thank you for your clear and systematic listing of your experience.
Like you, I am not diabetic but about two years ago, started having numbness, mostly on the toes of the left foot which has spread to the forefoot and pretty much the same on the right foot.
There is a little tingling at times and a very rare pain which dissipates in short order.
A CT scan showed spinal stenosis but an EMG showed no connection or causality between those.
Special blood analyses for heavy metals came back normal.
I have been on statins for many years; also on Protonix for GERD.
I also take flecainide for Afib. I had a coronary ablation in March.
We walk one to 1.5 miles most mornings which doesn't seem to be a problem. In fact my feet are better when I am active. Sometimes, when lying down, they can feel like cardboard.
I will start physical therapy next week. Not sure how that will help other than functionality, strengthening, balance, etc.
You didn't say how old you are. I will be 73 next week.
Wishing you all the best with this journey.

I am 65, so this started when I was 62.

"In fact my feet are better when I am active. Sometimes, when lying down, they can feel like cardboard."

^ same here, walking seems to make them somewhat better and they are worst first thing in morning

One other thing: I was diagnosed with mild to moderate sleep apnea. As far as I can tell I sleep fine. But oxygen meter shows my oxygen levels get low during the night sometimes and with a CPAP machine they do not. I have had CPAP for about a month and no difference yet.

Interesting...I was diagnosed with mild sleep apnea in 2018. I tried the CPAP at which I was unsuccessful as I couldn't tolerate the pressure. My Cardiologist/Electro Physiologist thinks the sleep apnea could be a factor in generating Afib episodes at night so I just had a new sleep study last week during which they used a BIPAP (or bi-level) machine which was a revelation as I slept the rest of the night with it and woke up feeling better than I have in years.

With the BIPAP, you can set it for two different pressures for inhalation and exhalation. We are awaiting the full report from the Pulmonologist and I have requested my doctor to prescribe the BIPAP machine.

I'm not sure if/how sleep apnea would be related to neuropathy. Of course, neuropathic symptoms can also include circulation issues which you say you don't have. I think in my case circulation is a factor.