Neurofibromatosis

[livingwith]

I am writing this article because of NF. I am 41 years of age and have 2 sons, but only one along with myself that has been diagnosed with this disease. The thing is I am not sure rather we have NF 1 or 2 or maybe even something I rescently read about called Schwannomatosis that is even more rare.
I have also been diagnosed with a tpe of neuropathy I am not in a area where there is a geneticist available so I have to travel about 240 to 300 miles plus to get to one of them. I have been to two...Read the full article

[Debbie J]

My son has a possibe diagnosis of NF1 for which we are waiting on confirming tests - he is 11 years old and as no other person in our family has previously had a diagnosis we are educating ourselves about the signs and symptoms. He seems fairly healthy but recently has complained of weakness and headaches and we are trying to deal with his inability to sleep but we are unsure whether any of this is related to NF1. What kind of symptoms do you get and are any of the above familiar - your comments would be appreciated.
With gratitiude Debbie

[ekimzus]

Yes, sounds like we are each one in 3,500. I am only writing a brief response, because I am exhausted, and been in pain all day today. I would like to be in touch with others. Below is a website that can give you a lot of information on NF. Pay particular attention to the NF 2 issues, as this is much more rare. The other is even more rare.

If a Neurologist has told you that you have NF, and didn't say which ... I can assure you that it is NF 1. This is far less serious, and in 99.5% of the cases, NOT cancerous.

http://www.nfinc.org/

Mike Strehl [moderator note: e-mail address has been removed]

[sprewitt35]

Hi,I live in Ga. and have no insurance to cover bills from doctors.The tumors I have are all through my body at least 40 of them the size of silver dollars.The pain is terrible 24-7 and depressing.I am signed up for SSD and it's been almost three years.I've been rejected twice and am close to a hearing with an administrated law judge.I also have a metallic c-spine fusion on three levels that causes alot of pain.It seems like no one wants to help... just lost in the cracks.I applied for medicaid and was rejected.One of my tumors in my abs was cancer and because I didn't have insurance I could not have radiation treatments.So,I say to you... keep records of every doctors visit you have it will be important later.

[cellsmail]

I will be 43 I have types of NF I have an extremely large plexiform and small ones all over then tiny ones everywhere even on my hands and feet I suffer 24/7 I worry if they continue to spread as they and have been of cancer if not already, I lost so much wiegth I tried of force feeding myself to try to hold weigh Back in 2003 I went to Duke to try to get help got use as a ginnie pig gave no help even thou they said they help me find surgents and all ,said for me to take pain management couseling,but they comfirm I had both NF1 and NF2,and got put on pain blockers which sent me into deep depressing
I wasn,t depress so if you take meds with a antidepressent in them it cause you to become depressed ,I suffer from cronic pain I feel for anyone who has this disoder .

[shanas]

My best friend of 27 years has NF1. I can remember her having severe migraines all through school. Now she has 5 children. The oldest daughter who is 13 was diagnosed when she was a toddler. She too has the severe migraines along with other severe complications that she's had to undergo multiple surgeries for. She has to have MRI's once a year to see if the plexiform neurofibromas in her brain have changed in size. She is under the care of a wonderful geneticist at OU Medical Center. I think the yearly MRI scans are essential, especially if the tumors are growing inside the body like this young girl's are. If anyone reading this is a teenager and can tell me how to help this young girl who is dear to my heart deal with the emotional issues that she is starting to deal with (depression and other psycological issues), I would greatly appreciate it. If I can answer anyone's questions, please let me know! My friend and I both have been dealing with this for the 9 years with her daughter and are about to go a second round with one of her twin boys who also has NF.

[Ginah]

I'm also 43 w/ NF. The bumps increases in numbers when I got pregnant. I have it on my face, forehead, neck, hands, fingers, feet and toes now. I have bumps on my back and stomach and arms and legs but it was just some----so it didn't really bothers me or affect me in a way. But then, I got very sick and lost my balance. They found out I had tumor/bump in my spinal cord. They operated on me in 1986--it was a a long surgery. I recover and was able to walk/stand etc again--but the pains and aches I feel never goes away. I feel it all the time but I am used to it already. I never take no medicines because I was told, there's no medicines. I was also operated on my right thigh due to a hard lump inside. And, I had one bump removed on my face because it was growing bigger. And, then in 19888, I started to feel severe pain and aches and headaches; so I went to see a doctor and MRI was taken and there, they found out that the tumor came back on my spinal cord. They operated on me and this time my neurosurgeon cut deeper in my spinal cord---hoping for the tumor/bump not to ever come back again. Well, it's now 2008--I am doing okay. I am somehow sad when I look at myself due to the numbers and shapes of bumps I have on some parts of my body. Also, my daughter now 14 was diagnosed with NF due to 6 cafe-aulaits presents on her body at birth. She has more cafe-aulaits now, one even raised up and got bigger. My 12 years old son don't have it. Now, about two months ago, a new bump/lump appears on my throat just like magic..I went to the doctor and they still looking into it. I am waiting for a CT scan. Well, I don't really have any clue on how I get NF because none in my family or my family generations have it. Just me and now my daughter. I have one advice though. Have a peace on mind...This help you get through. Ginah

[snowbear]

Hi have you been to the NF support group? its on line..Please try it many other people just like yourself are going through the same thing. Its a good place to find information out also to care and share, laugh and cry as we tell our personal stories.. and get medical information about NF.I hope you find the site and join..Iam snowbear on that site. Many thoughts are with you.