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Idiopathic neuropathy and dizziness.
Neuropathy | Last Active: Jan 23 1:57pm | Replies (80)Comment receiving replies
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.
Replies to "I’m 49. It started 8 months ago. Numbness, pain. Patchy distribution face, hands, legs. When I..."
my symptoms are exactly what you are experiencing 100%. Lightheadedness but head feels heavy. I feel like a bobblehead if I have to walk on uneven ground. Going from sitting ( always raise my feet up in my lazy boy chair because it lessens the foot neuropathy) to standing and walking often brings on a rush of spacial disorientation. I can deal with this while at home but tend to get anxiety when I go shopping or out in public. I now drive as little as possible which depresses me because I have a sports car I no longer want to drive. I just hope that this lightheadedness ceases to get any worse because if it doesn't, well, we know the rest of the story. I got vaxxed and boosted during COVID and have heard about this so called vaccine injury. My father is a physician and recommended getting the shots. He also poo poo's vaccine injury as a cause. I was a healthy guy up until a year ago. I think we have autonomic peripheral neuropathy as Steve has noted elsewhere on this site. My neuro doc has no idea, I have some neve tests in two weeks but appointments are always two months apart so there is no rush to get this figured out and in the meantime I continue to get worse. Sorry you got this disease at the age of 49, way too young. I'm 66.
Carter
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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.