Neurofibromatosis

[livingwith]

It all started when I was about 37 when I started going to my doctor with a sensation of something deep inside my ear canal. Eventually I was referred to an auditory clinic where I had all sorts of balance tests (I wasn’t feeling dizzy or losing my balance at this stage). Nothing was found. (no scans at this point). Continued on and off with this sensation and then during my 47th year stared getting tinnitus (sounds like it was it was raining, ). I also kept knocking my left side like whe...Read the full article

[Avi]

Hi, i am not sure if u can help me, my boyfriend mother has neurofibromatosis and i would like to know if he can get it, he is 19 years of age and so far there is any coffee with milk spots. Do u think he can get it when he is older. I think his mom got it in her late twenty's or early thirty's . . . he also have a sister who is normal as well. What do you think.? u think he would get it

[jafco]

My husband had 3 siblings. One was obviously afflicted with NF as he had multiple turmors on his face, arms, and legs that were visible. My husband had the cafe au lait spots but no tumors until he was in his 20's and all of his have been under the surface. He has had them removed from his arms, back, legs, stomac, if they pressed on a nerve or bothered him. Otherwise, he has left them alone. He has a nephew who also has them on his arms and legs. I understand that this is a dominant gene that can show up in at least 50% of one's offspring but is carried as a dominant gene by all the offspring. So, one might not visibly see evidence of the affliction but it is there. It can be very mild with only the spots and no tumors or extremely disfiguring--check out all the websites. My husband and 2 siblings are all professionals with no apparent hearing loss/retardation, etc but his brother did die in his 30's of one that was internal and metastasized in his chest; of course,he had the most severe case as well. Consider carefully a relationship with anyone who has a family member with this disorder and know that even if offspring has no symptoms, they are carrying the gene.