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Full body Loss of sensation(numbness) and tingling

Brain & Nervous System | Last Active: Apr 4 10:08pm | Replies (30)
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@johnbishop

Hello @anon25user, Welcome to Connect. I know how scary it can be when the doctors are not able to figure out what is causing your symptoms and you feel all alone. I'm tagging @potta54321, @franksgirl210 and @terlato who have discussed similar symptoms in other discussions to see if they may have some thoughts or experiences to share with you.

Have you thought about seeking help at a teaching hospital or major health facility?

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Replies to "Hello @anon25user, Welcome to Connect. I know how scary it can be when the doctors are..."
terlato | @terlato | Oct 10, 2022

I think genetic testing is the correct way to go. I see a neurologist and pain management for HNPP.
I also have CLL and see oncologist. Now trying plasma infusions and helping.
My newest is Neuroendocrine tumors. They thought I had POTS. Now I have to see a endocrinologist to confirm diagnosis. This also might be causing a lot of problems. Will keep updates.

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