Neurofibromatosis Support Group

Mine started after I had children, when I was in my late 20's. I don't know if having children had anything to do with it or not. I suspect it did. There is nothing I know of yet that slows the growth. I have had many removed, but finding a doctor is hard. I don't know where you live, but there is a doctor in New York who will remove all of them. But there may be a doctor nearer to you that will also do it.

Hi Marah, thanks for your advice, appreciate it :) Tomorrow I will be seeing a doctor regarding my nf to discuss some questions I have, and hopefully get some answers about any new medications or procedures. I live in Australia, so I guess I'll have to see tomorrow if I can speak to someone about getting most of my neurofibroma's removed. I haven't been to a doctor since I was in my very early teens so I can't wait to hear what they have to say. I didn't know much about nf (either did my parents ) as the doctor we last saw lead us to believe that there was nothing wrong. Thank god for the internet and forums, cos once I started noticing my skin was changing I got paranoid and searched neurofibromatosis then saw the other complications. I've had similar changes to what I've read and it would be good getting these things checked out.. I don't know if it's from loud music, though my hearing seems to have depreciated a bit too, and my eye sight isn't the greatest! Though I guess that can happen to anyone, though I've also recently started seeing 'floaters' in my eye.. what sort of looks like spider webs. I saw that some people on here have that problem as well. That's something I'd like to discuss with my doctor tomorrow, as my eye specialist didn't know why I had it. He said usually those cases happen when you're in your 50's.. i'm only 24! I had no idea it could be linked with nf, so didn't mention it. Ahh.. so many questions to ask tomorrow.. It's nice to know there are people out there who understand what I'm going through as well. Thank you all!

Vision and hearing problems could be from any number of reasons. with the hearing loss it could simply be a waybuildup in your ears, or if you have a family history of hearing loss, that could also affect it, as could listening to loud music as you suggested, with the floaters in you vision, that could also be related to any number of things, such as diet, or if you are prone to migrain headachs. Some people will see floaters or "flashing squiggly lights" in their vision just before a migraine. I am 29 and I also get those floaters, for me, it can mean that i will have a migrain soon, so i will take ibuprophen, that usually solves the problem, the floaters stop and i don't get a headache.

I've never had rapid growth, just slow accumulation. There isn't anything known to slow down growths of dermal/superficial neuorfibromas. All the drugs that are in clinical trials are testing efficacy on plexiform neurofibromas, which is different from dermal/superfical kinds.

Floaters are pretty common -- sorta 'normal' stuff that just happens to lots of ppl, esp. if you are near sighted. Usually they are just clumps of dead cells floating around the gel/liquid in your eye globe. Kinda gross if you think about the fact they are dead, but it's kinda like how there's always dust in the air. You don't see them or notice except in certain situations. Rarely harmful, but sometimes annoying. I got them(or first noticed a lot of them) in my early 20s.

You can get your hearing tested if you are worried but your hearing does go with age, though mid 20s might be a little too early for that.

Ive never had floaters,I do get eye spasms sometimes dont know if its NF related though... NF is weird for each indivisual... alot of people have LD from it but I never experienced tht either... most i get is high blood pressure,scoliosis,the bumps on my torso,and my heart rate goes up if Im around flashing lights or video games... but other than tht,tht sums up my NF.But like Marah said mine wasnt even noticable till after I had my kid.. I hear hormones in women can affect it... thts why I stay away from birth control or any vitamins with extra hormones added in it.... I wish there was something to slow the growth of the bumps down but I dont think there is atm... just getting them laser removed is all i know of.

ya if your noticing the fibroma grow its good your doing something about it. It won't every quit and it won't go away. I sure wish i would have done my surgery years ago but live and learn.

mines started to show more in my mid-twenties....now they are all over....everywhere....I'm not going to sugarcoat it .....it doesn't look good...people will stare...back away....ask questions....make fun ..you just have to deal with it.... for me it.when they started to come out they hurt...itched....it sort of looks like I have a bad case of chicken pots that don't go away......yeah there are procedures you can have that can remove them...but the scares will always be there...I don't hide my arms or legs....and you cant slow it down ....it just depends on you and how it effects you .....as soon as you except it...you'll sleep better...the people who truly love you ...will love you no matter what......I'm about 10 years older then you..,so I have been there...keep your head up.....