Neurofibromatosis,

Hi,

Could I please ask, does anybody have above and PAF is a symptom of this disease .

Thanks,

Catherine

[shadski]

Hi I as tested for neurofibromatosis about a year before I started AF but did not have a definite diagnosis of it.

[Hidden]

Thanks for sharing, i am trying to find a cause for why I am loosing my hearing and sight, when I came across this disease above it mentioned the coffee like stains on your skin and I have a lot of them. It's something I was going to bring up with my Neuro on my next visit and just wondered if AF was a symptom too. Did they give u a reason for testing?

[shadski]

Hi I have a lot of mole like things on my body that are not moles. They don't/didn't look pre-cancerous but they tested them and the percentage that came back neurofibromatosis were too high. then I had a physical where they were particularly interested to see if I had dark spots or mole like things in the areas of my body that don't get exposed to light- my pubic area, inguinal groove and under my breasts. Also checking out family history to see if any one else had it since it is frequently inherited. They did the most through eye exam I have ever had -way more complicated than a normal glasses exam. got to go take care of a puppy

[Lissao21]

Hi it sounds like you have NF type two, I have type one so I would and do get lumps and benign tumours growing every where. For some reason it is worse down my left side. The difference between the two is that people with type 2 are more likely to get tumours on their auditory nerves and on their optical nerves causing deafness and blindness. Hope this helps

xx Lisa

[Hidden]

It does, thank you. I am completely deaf on my right side now, I did have an mri to look for lumps and it was fine, so still looking for answers xx