Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

Interested in more discussions like this? Go to the Neuropathy Support Group.

jfn | @jfn | Jun 9, 2023

In reply to @tomkipp "Hi What is the "new therapy" that you noted? Tom" + (show)

I have had the low level light therapy, it worked for me. I will write more about if you would like me to. Not every treatment works for everyone, so dynamic.

Illa C. Chambers | @illac | Jun 9, 2023

In reply to @florentina99 "Hi Galb I too am experiencing non diabetic neuropathy in my intestines(slow gut) ,right shoulder and..." + (show)

Hello I am so sorry that you feel that away I to have Progressive Peripheral Neuropathy non diabetic and yes I am numb from the waist down pretty much and I felt the same way as if my life had been taken from me overnight mines just happened all at once not even a warning. Woke up couldn’t really walk or balance my self or be stable on my legs. After running test and telling me I had it severely and there’s nothing they can do. I fell into a deep depression with so many unfortunate thoughts going through my head. Then I began to pray and give it to God and trust that everything would be okay and with that I have learned to manage my ailments, also joining this platform has helped me more than you can imagine hearing and sharing has been amazing for me. I pray that something has been said to bless your heart but most of all to let you know you are never alone.

tomkipp | @tomkipp | Jun 9, 2023

In reply to @jfn "@tomkipp Hi, I have had the low level light therapy, it worked for me. I will..." + (show)

Thank You
Is this the same as the light treatment wraps being sold now? I bought one from Tommie Copper and have used it for months with no noticeable impact.

jimmccown1 | @jimmccown1 | Jun 9, 2023

Yes, interesting reads. Mine was caused by a cervical epidural hematoma. Seems one in a million people have the possibility of this. It occurred between C3 and 5. So, I have matching internal jewelry as they have been fused. Again, no know cause. It was bad at first. As mentioned mentioned in earlier post I retired from the military after 27 years. Adjustment to the civilian world is a challenge in its own. Two years following my first day of retirement, it happened. Most bizarre day. Was on another planet for over a week thanks to emergency surgery, post op infection, and the various meds. I vaguely remember some things. I felt I was a POW and had to escape. My wife remembers my odd phone calls. I tried to get out, but when you can’t stand and move it’s hard. I was found on the deck numerous times. Fortunately I didn’t hurt anyone, then again I couldn’t. Well once back on earth, the long road started. I pushed on as was presented to me in one of the visions, dreams, or hallucinations take your pick. I’ve tried many “snake oil” products. I’ve mentioned what works for me. We are all different. You have to go forward. I’m looking into chiropractics now. I’m going thru the VA for this, that’s a challenge of it’s on. What works is around the corner. Pray, research, and push forward. Need to go, stuff to do.

hotfeet | @hotfeet | Jun 9, 2023

In reply to @rayjay "I am 45 and have non-diabetic neropathy. In my youth I was a gymnast for 10..." + (show)

@rayjay

I am 45 and have non-diabetic neropathy. In my youth I was a gymnast for 10 years, and a soccer player for 10 years. At 36 I had to have 3 plates and 7 screws in my left foot to repair old injuries. I also have a total knee replacement in my right knee. Although I was fully vaccinated, I got COVID 3 times. After the last bout of it, I started getting burning, tingling, stabbing, and weird numbness (numb, but not numb) feeling. I have loss of feeling going up to my knees in both legs. I also have lower back and leg pain.
I'm adopted so it's hard to determine if it's hereditary or not. I've heard that my bio father is diabetic, but I've been tested and that is not the case. I am in no way saying COVID is to blame, but it's weird that the symptoms of neropathy inconveniently showed up just after I had it. I work out 4-5 days a week and it is painful after every workout, but I'm in pain every day whether I work out or not. So I choose to try and stay healthy.
I have been an active person my whole life and it is heartbreaking to feel this helpless to fix the debilitating daily pain. I will not do opiates, as they are only a band-aid and are more harmful to my health.
I started to see a neurologist and have tried everything drug companies offer. Lyrica, gabapentin, topicals, compounded pharmacy remedies, etc. I am a great candidate for a spinal chord stimulator, and I'm in the process of getting approved. I have done the psychological evaluation, I'm getting my MRI's (thoracic and lumbar), and have spoken to reps from Abbot and Nevro. I've decided that I'd like to try the Nevro. It is ultra high frequency and has the best results for pain relief that I've read about. I've also read that people don't feel the buzzing (MORE pins and needles feelings) that the lower frequency Abbot causes (paresthesia). I'm going this route because I want my quality of life back without the side effects of drugs that will also take away from my daily activities.
Has anyone else considered this option or has had this implant? I'm curious about your results. Or any other advice for that matter.
Thanks!

Jump to this post

You might find this helpful if your PN developed only after the Covid vaccination. The trauma to your foot would typically be suspect for nerve damage, yet you apparently had no symptoms until the Covid events.

See this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9128783/
Hope this helps.

bettyg81pain | @bettyg81pain | Jun 9, 2023

In reply to @rayjay "I am 45 and have non-diabetic neropathy. In my youth I was a gymnast for 10..." + (show)

@rayjay

Jump to this post

I did have slight neuropathy in my feet and was noticing a balance issue; but, it was when I actually got COVID that I got the screaming pain so there has to be some connection. I just had the Boston Scientific trial implant. So far have not experienced any relief by the 3rd day-still working on different programs. I, too, had an extremely active life and had hoped for many more years of the same. All we can do is try everything!!

jfn | @jfn | Jun 9, 2023

In reply to @tomkipp "Thank You Is this the same as the light treatment wraps being sold now? I bought..." + (show)

@tomkipp
Hi,
The cold laser light therapy was at a chiropractor. I looked for the best price, it was also offered at physical therapy. It was 2x a week for 4 weeks. My feet were so much happier afterwards. I had a few issues and then a day where my allergies went haywire (ironically I was staying at a hotel due to doctors visits, so one of the doctors experienced my Dante (esq) moment. So , I was put on I V ig for several reasons (not fun to have more than one box checked to qualify,) and went thru a few more layers. I went back for more cold laser therapy and it worked again, although not as well. So, I do think it made a difference, I think the IVig, diet ( for the most part I eat well), exercise, yoga, fascial massage, and attitude help. It has been a really long day, and I wanted a soda. I feel it in my toes. I will drink double the volume of soda, in water to help. I do my best everyday to make my nerves happy.

JFN

tomkipp | @tomkipp | Jun 9, 2023

In reply to @jfn "@tomkipp Hi, The cold laser light therapy was at a chiropractor. I looked for the best..." + (show)

Thank you

kd59 | @kd59 | Jun 9, 2023

In reply to @artscaping "@user_ch98d0b5c . Good evening Ann. “Trauma” is the cause of my SFN (small fiber neuropathy). The..." + (show)

Did I misunderstand you, as the medication Bisphosorine is for osteoporosis, and anxiety is a side effect. It’s not used to treat anxiety.

Chris, Alumni Mentor | @artscaping | Jun 9, 2023

In reply to @kd59 "Did I misunderstand you, as the medication Bisphosorine is for osteoporosis, and anxiety is a side..." + (show)

Oh my dear......so sorry. I spelled the name of the medication wrong. It is spelled Buspirone. And it is for anxiety which is caused by chronic neuropathic pain. My apologies.
Chris