Neurofibromatosis Type 2: Benign Tumors of the Nervous System

What Hospital is thisnxDr. practicing at?

I have nf 1

I wouldn't really consider the long term effects of this completely benign.

I am going through it with severe pain. And balence problem... How can i cure it?

Is this much like cancer?

Can anyone tell me how to get in touch with practitioners who investigate this issue? I have a non gene specific ehlers danlos syndrome that lines up with classical criteria. We also have a family history of brain stem glioma and acromegaly. I have a lot of the other autonomic neuropathy problems from confirmed small fiber polyneuropathy and idiopathic anaphylaxis requiring iv medication intervention. I also have tarsal coalition and so do both of my parents and siblings, with mine requiring reconstructive surgery several times. I have a lot of unexplained masses on my arms, back, and butt, and I keep getting told that its not EDS related, but the same doctors only recognize type 1 NF and that I dont have that because of their small understanding as to the other types. So just trying to figure things out, I guess, since my lesions/masses look like nf2. I'm also having progressive ocular issues asymmetrical with one eye and night blindness in addition to the normal pupil dilation issues of dysautonomia

i am 15 years old and i have both type 1 and 2😔

I got nf2 and I'm starting to get ringing in my ears, visions gotten blurry before and now my back and ribs are hurting, got three large tumors under my left armpit that are deeper inside there,

Dr. Asthagiri at UVA is the most amazing, personal, reliable, comforting, honest and the most talented neurosurgeon. When he preforms surgery on my son I'm confident it will be successful.

My mom has it? Should I get tested?

I have N2NEUROFIBREMOTOSI plus I have brain atrophy I am unable to balance myself PL advise

I’m 14 with nf2, but let’s all hope that by the next 2-3 years they’ll find a cure. 🤞🤞🤞

Getting my MRI tomorrow, I was fortunate enough to just have fibromas and ADHD for the 1st 30years of my life, over the past year I have developed large plexiforms, severe pain, hearing and vision loss, and an unsteady gait... Trying to get into a specialist without great insurance was near impossible. Now I finally qualify for Medicaid and can start seeing a neurologist again.

I have nf 1 and i have diabetes

I live with nf2 it's very hard to deal with very painful everyday I have a huge plexiform on my face it's def not easy to live with

We need a chat room for people with nf1 and nf2 also nf3