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Looking to connect with people who have non-diabetic neuropathy
Neuropathy | Last Active: 8 hours ago | Replies (910)Comment receiving replies
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.
Replies to "I posted here somewhere else before, just updating.... I have neuropathy in the feet: strictly numbness,..."
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.
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.
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 had similar PN, but after many MRIs and a year and a half, a PET test found a spot at T11, inside spinal chord.
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Hi @rickhood, If you ever want to find an older comment you posted, just click on your member name to go your profile and settings. Then click Comments at the left and you will see your most recent post at the top. You can also get to your profile and settings by clicking the profile icon at the top right corner of the screen.
Walking is good and something I wished I was able to do more. I'm not sure if you have done any research on neuropathy and things you can do to help yourself but the Foundation for Peripheral Neuropathy has some things others have found helpful here - https://www.foundationforpn.org/living-well/