Anyone have Neurofibromatosis?

Posted by joyajoe @joyajoe, 2 days ago

Does anyone have this disease? Have neuromas all over body, no balance, burning mouth, painful burning hands, feet,legs up to knees.
Bruises on arms and legs turning into weeping sores. I am 75 yrs old
Female background Turkish-Spanish. These.neuroma’s started appearing in my early 40’s, causing serious pain and difficulties by my
50’s..Live in West Palm Beach,Florida. Cannot find a neurologist in my
area, most only want Need help,any ideas?

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Welcome, @joyajoe. I'm tagging members like @painwarrior @pkindron @keikowacko @schwannjohn @stephbusta @kathp @normajean1 @nfrunner, who also have experience with neurofibromatosis.

You may also be interested in this related discussion:
– Schwannomatosis (NF) https://connect.mayoclinic.org/discussion/schwannomatosis-nf/

Joyajoe, might getting a second opinion at Mayo Clinic in Jacksonville, Florida be an option for you? If yes, you can learn more about requesting an appointment here: http://mayocl.in/1mtmR63

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