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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 1 day ago | Replies (6021)

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@rajoy

Cause unknown. Feet and legs. Not in hands. I have Kaiser Insurance. Been to primary care doc. and a couple of neuroligists. Nobody has mentioned surgery.
The last neurologist told me it is going to get worse and there is nothing she can do for me. So I haven't been out of my house for about 1 1/2 years except to see a doc. My wife travels and I am here alone for a few days at a time. Really sucks.
If the Doc is right I am headed foe a LTC facility soon. Luckily I have LTC Insurance.

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Replies to "Cause unknown. Feet and legs. Not in hands. I have Kaiser Insurance. Been to primary care..."

@rajoy, You are right, it really does suck. The best thing each of us can do for ourselves is to learn as much as we can about our condition and what can help us live a better life with the symptoms we have. Although there is no real cure, there are many different treatments that can help provide some relief. The problem is finding something that helps you and what can help you there is to learn more about neuropathy and what treatments are available.

The Foundation for Peripheral Neuropathy is a great place to start your learning journey.
--- https://www.foundationforpn.org/living-well/

So sorry to hear no cause has been determined, Rich. In my case, I was fine until about two years ago. Woke up one morning with my feet feeling so heavy I could hardly move them. MRI ordered by PCP revealed stenosis in my lower back and I was referred for surgery. After seeing a number of ortho and neuro surgeons, I decided on an ortho spine specialist and had a laminectomy a year ago today. Immediately after surgery, the horrific pain in my hips and legs was gone. I could walk. But then I noticed the neuropathy in my feet, with numbness and tingling that had not been there before. Surgeon said IF the neuropathy improved it could take 12 to 18 months. A year later it is still about the same. It affects my balance and my endurance for walking. Tell me, please, what tests have the neuros had run on you? MRI? Nerve studies? EMG? Has anyone done blood tests to check vitamins/minerals levels? Have you been referred to Physical Therapy to see if it could help? And if you are in a city, have you checked to see if there might be any ongoing medical research studies you may qualify for? Obviously, I'm not a doctor. I'm just another patient like you. But I've learned through the years that we have to be our own advocates where our health is concerned. My ortho spine surgeon is not a neurologist, and he has given me Gabapentin, and then Lyrica, neither of which I was able to continue... and neither one helped. Last week, I saw a podiatrist, and she has just done a skin biopsy for SFN, and she has referred me to a neuro lab to have an EMG done in two weeks. My PCP has referred me to a neurologist, but two months later (and many phone calls) they still have not called me for an appointment. 🙁 My podiatrist immediately gave me a prescription for Metanx. I take it twice a day. I had never heard of it at all until I saw her. It will take several months to tell if it makes a difference. In the meantime, I will continue to research on my own. I hope you will do the same! Best wishes! Mike