dealing with Neurofibromas

I HATE this disease! There is a non stop to it, when you have some removed from your body and start to feel good about yoursef again, more seem to pop up in other places on you body like your face or places you don't want them to be seen. I just don't understand why doctors can't seem to find an end to this other than cutting on us or burning our skin. I have tons of other health problems due to this disease. I try to have a good attitude and deal with things and have faith and believe things will get better, but here lately my faith is getting week and i wonder if things ever will improve. All i can say is that It will take a miracle if it ever does.

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i agree. sometimes i think to myself 'am i in hell or something?'...im just waiting for somebody to solve the nf puzzle!

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Hi, thanks for your reply, i read in your profile where you mentioned about your daughters having this disease along with you and some more family members. im sorry for all your going through with this too. You know they say this is in our genes and hereditary, but the thing is nobody in our family history has ever had this. The doctors seem to think i got this through a blood transfusion back in 1990 when i was 25. I started getting Neurofibromas at the age of 27 two years later. They started out tiny but when i reached the age of 35 i had 27 of them cut out. I had one the size of a lemon on my hip the rest were pea size. I had them removed before they got bigger. Now i recently had 7 burned off at a dermatologist office. It seems to me the more you have removed the more that grows. I have tiny ones all over that itch, burn and bothers me a lot with just knowing they are there and are someday going to get bigger. Anyways, it's all out of my hands and like you say, its like solving a NF puzzle. Maybe some day soon we can all find a doctor to put the pieces together for us all!

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I DO KNOW WHAT YOU MEAN ,, NOONE ELSE IN MY FAMILY HAS GOT NF1, DAD HAS A BRN MARK ON HIS HEAD BUT OTHER THAN THAT NO LUMPS, I HAD A PARTIAL REMOVAL OF A PLEXIFORM FIBROMA BK IN 06 IT WAS ON MY LEFT HAND SIDE HIP THERE WAS A PALM SIZE RAISED LUMP WHICH WAS NUMB, AND THE SKIN WAS SHINEY ON IT. IT ITCHED LIKE MAD, AND THE REST OF IT IS GROWIN AGAIN I ALSO HAVE GOT A NEW LUMP GROWIN DOWN THE BTM OF MY BACK AND AM WAITIN TO C WHAT THE DOCS ARE GOIN TO DO 4 ME, ( SORRY I'VE GONE INTO TXT TALK) LOL. IF THE DOCS FIND A CURE IT WILL B GREAT, I ALSO HAVE GOT ANOTHER PROB WITH MY HEART AND THE DOCS THINK THAT AYB THE TWO PROBLEMS ARE CONNECTED SOMEHOW.

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hi im yogesh 30yrs old male frm india ihv nf1 ihv hundreds and hundreds of nots all over body frm toe 2 head. iget pain in anytime suddenly and its so irriating that ifeel kilng my self. but then ihv no option then 2 except that ihv 2suffer ths wht god hs gv me

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Shayree,

You did not get NF from a blood transfusion. Lots of people have NF without any family history, myself included. About half of the people with NF get it from a spontaneous mutation (no family history) and the other half through a passed down genetic defect on the NF gene. (Chromosome 17)

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You read it because I feel the same way I try to have faith and it hard to have faith when god is suppose to make things better .I think god is suppose to fixes things but he not and there to many of us who has this issues and ha e other Heath issue with this problem and it sadness me ever single day that more and more people have it .But I know there people with cancer who way worst Siome time but I think we all in the same battle want to find a cure for this and god is try his best but he has to many problem at once and he have to more dotcor who hasn't never here of this diease and that one thing that drives me crazy

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It is well our God is to big then neurofibromatosis its only a matter of time bf Doc find a way just as there find a way to reduse AIDS AND HIV

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I can relate. I have alot of health issues too. I have 2 tumors on my brain stem and alot of them on and along my spine. I have them on my optic nerve and in my ears which left me almost deaf. I have had over 300 removed and still have hundreds all over my torso legs arms and face. I've had 2 heart attacks (not from high collesteral but from fibromas blocking heart valves) I've had gastro-intestinal blockages from tumors in my intestines. I get horrific migrains from the tumors on my brain stem. I'm the only 1 out of 8 siblings that has this disease. I had a "Harrington Rod" put in my back because of Sculliosis (sp). I was told too that because of the back surgery and all the blood transfusions I received that is how I got nf. But I find thats not true. I know there alot of nf sufferers out there who are far worse than I am. I'm really thankful for this site. I thought for the longest time that I was the freak. I've never heard anyone having this till I stumble onto this site. It's still hard to deal with but knowing I'm not in this alone and there are others who know what I'm feeling and the pain that comes with this. It would be nice if there was someone near where I live that I could get together with have coffee and talk one to one about the problems we face on a day to day basis.

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NF STINKS and all the tumors that come with it. People look at you all you know they are looking at the bumps/tumors. You can't stop from getting them each time you start seeing a tiny tumors you say toyourself He comes another one. Then one wants to date. SO I HATE HAVING NF

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SHOULD OF SAID NO ONE WANTS TO DATE YOU!

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I KNO THE FEELIN OF HAVING TUMOURS I'VE GOT AL LOT OF THE BRN MARKS ALL OVER MY BODY AND HAD A PARTIAL PLEXIFORM FIBROMA REMOVAL IN2006 AS IT WAS GETTING REALLY LGE AND PAINFUL ( I HAD OPEN HEART SURGERY IN 2001 AND THE INCREASE IN BLOOD FLOW STARTED THE PLEXIFORM TO GROW ETC, IT HAD A PALM SIZE RED RAISED MARK ON IT AND THE SKIN WAS SILVERY AND I COULD USE TWEEZERS ON IT AND THE RED PART WAS NUMB. BUT THE PAIN WAS LIKE A VERY BAD TOOTHACHE. I HAVE GOT A FEW NEW NODULES GROWIN ON MY BODY NOW AND A CURVITURE OF THE SPINE, NO ONE ELSE IN MY FAMILY HAS GOT NF. DAD HAS ONE BRN MARK ON HIS HEAD BUT THATS ALL. WE THINK THE THE HEART PROBLEM( IT IS CALLED HOCM, HYPERTROPHIC OBSTRUCTIVE CARDIO MYOPATHY) STARTED WITH A VIRUS THAT I HAD AFTER HAVING THE WHOOPING COUGH INJECTION,
BUT WE CANT BE SURE OF THAT .
AI DONT KNOW I ANYONE OF YOU SAW THE PROGRAMME ON TV A WHILE AGO CALLED THE BEAUTY AND THE BEAST? WELL THE GENTLEMEN CONCERNED ON IT ( ONE HAD NF1( HE WAS AN AMERICAN AND THE OTHER WAS A BRITISH MAN WHO WAS OBSESSED WITH BEAUTY AND COSMETIC SURGERY) AFTER MEATIN THE AMERICAN THE BRITISH MAN CHANGED HIS VIEW ON WHAT HE WAS DOING TO HIMSELF, IT WAS VERY INTERESTIN, TO SEE HOW WE ALL COPE WITH OUR ILLNESSES.

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THAT PERSON WHO DOESENT WANT TO DATE YOU THATS THEIR LOSS NOT YOURS, YOUR BETTER OFF WITHOUT THEM, ITS NOT WHATS ON THE OUTSIDE THAT COUNTS ITS WHATS ON THE INSIDE. IF SOMEONE IS AS SHALLOW AS THAT, THEIR NOT WORTH KNOWING. BELEIVE I KNOW. !!!

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THAT SHOUD HAVE BEEN BELEIVE ME, I KNOW

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