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I can't get properly diagnosed and I'm spiraling

Neuropathy | Last Active: Feb 19, 2023 | Replies (35)

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@njed

dave130 - I too share many of your same back issues and your surgeon, is being honest about the potential outcome. In past 2 - 4 years, my walking and standing difficulties have increased in particular with balance. I am lucky in that my neurosurgeon will not operate due to uncertain results. Second opinion confirmed the first. My thinking was could the back issues cause the PN? Like pinched nerve? Both started around same time. Multiple MRI's. Both neuro docs said no. Wonder how many people have PN who also have back issues.

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Replies to "dave130 - I too share many of your same back issues and your surgeon, is being..."

Sorry to hear you are going through this. I have similar situation. When my feet burning sensation started in 2017, the first neuro physician told me that the burning sensation as per my lumbar MRI was due to spin issues. I initially focused entirely on my back issues until Mayo Clinic diagnosed me after one year with ideopethic small fiber neuropathy. According to them while I do have spine issues, they are not serious enough to cause burning sensation, severe pain and numbness of such degree. Since then I have been experiencing progressive deterioration on a daily basis despite all kind of remedies and therapies including major diet changes, intermittent fasting and supplementation for extended period of time. The situation now is that mobility has become a huge challenge for me. I cannot walk from my bed up to the bath room. I am confused whether my first neuro physician was right in blaming my spine to be the culprit becsuse I didn't see any improvement after being diagnosed by Mayo clinic. I can safely say that one of them misdiagnosed me. I am now thinking that I need to start concentrating on my spine issues again although I don't have any major back pain.
I wish you and all those suffering from this debilitating disease a permanent relief.

Your situation does sound SO FAMILIAR!! I have always thought the Neuropathy was due to all the activity on my spine & Drs. agreed. I now have standing & balance issues, as well~~~but I recall I am 83. No more surgeries for me!! The MRI's recently conclude the mess in Spine area.