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judypall (@judypall)

Idiopathic neuropathy and dizziness.

Neuropathy | Last Active: May 22, 2022 | Replies (50)

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@sim1

I’m 49. It started 8 months ago. Numbness, pain. Patchy distribution face, hands, legs. When I walk I can’t quite process my surroundings, it is a kind of dizziness, head fog, off balance when turning. I’ve been in a state of terror. I did not accept idiopathic as an answer because I didn’t feel they did enough. I went to the Mayo Clinic. Got nerve biopsy report yesterday. It’s a neuronopathy – involves nerve cells themselves and likely has central nervous component. The worse end of the spectrum. I’m sad, very worried, but the journey continues with this revelation to investigate causes and pray for the best scenario in the scheme of things. The most important thing I want to say to you is you are not alone. Not in the suffering, not in the wondering, not in the impact on your life, not in the fear of what can come. If you haven’t had a nerve biopsy, ask for one. Spinal tap? I am now in a position when they will do one. Good luck and stay connected. All the lights are on here for you.

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Replies to "I’m 49. It started 8 months ago. Numbness, pain. Patchy distribution face, hands, legs. When I..."

Many thanks. Your “walking” experience sounds almost identical to my own. I’m a retired dentist (from a neuropathy) but can still extract teeth, and so I have been doing international medical/dental mission trips since 2004. I just returned from a Ukraine, Gambia, Turkey “tour” where I started using a walking stick to help with proprioception.
Thanks for the encouragement, and will pray for both of us to stay as “well” as we possibly can.