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Neuropathy: What works and what are scams?

Neuropathy | Last Active: 7 hours ago | Replies (481)
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@rich12019

Honestly, I’m 77. My brain still feels and works like I’m 30. However my body feels more like 100. I walk with a cane. I have poor balance. The neuropathy started when I was 63. Now the neuropathy is severe from my hips to my toes. Nerve conduction tests revealed that every nerve in my body is inflammed. Although, no damage. Next step was as spinal tap. Came back negative. Next step lidocaine infusion. 4 weeks in a row. Four hrs each weekly visit. Now 15 years later I can’t exercise at all. Can’t walk or bike ride. Everything out there is a scam. I have a very good Dr and prescription regimen daily. So I have a functional life during the day. But suffer more at night. Then it’s ice pack time.

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Replies to "Honestly, I’m 77. My brain still feels and works like I’m 30. However my body feels..."
Ray Kemble | @ray666 | 4 days ago

Hi, rich12019 (@rich12019)

I'm 79. I have idiopathic large-fiber PN, so no pain but terrible balance. The invisible onset of my PN was 10-12 years ago, but I wasn't given an "official" diagnosis until August 2022. That's when I started reading up on PN. That's also when I began to be bombarded with scam come-ons. Fortunately, I managed to duck the come-ons. An honest, caring neurologist and on-and-off PT have kept my PN at bay––plus a sepsis infection, which put me in conversation with a new team of specialists (infectious disease), instilling in me the value of good nutrition. I can still hear those specialists saying, 'Protein, protein, protein!' 🙂

I wish you the very best of the New Year!
Ray (@ray666)

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harley22 | @harley22 | 3 days ago

I’m in the same situation as you.
My neuropathy started when I was 60, which was 12 yrs ago.
My balance is awful, can’t walk without a cane or walker, and I need a wheelchair because I can’t walk long distances anywhere.
I can’t even find shoes that are comfortable to walk in,as they hurt daily.
Some days I’m at my wits end with the pain, and I take Tramadol 2 tabs daily along with Ibuprofen for pain relief.
None of the many neurologists that I’ve had over the years, has helped me.
I’ve also been on Gabapentin 2400 mg daily for few years, and it did not work for my pain and numbness.
Also have been on many of the routine neuropathic drugs over the years, with no relief from them either.

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