Neurofibromatosis Type 1

Question: What is the incubation period of Neurofibromatosis Type 1? This is for a school project, and i need info on neurofibromatosis type 1! Please post sites and info on the history of it and the incubation period. Also i need the transmission, diagnosis, treatment, and how to avoid it! Thanks. Email me info too.

Answer: its a genetically inherited disease so it does not have any incubation period. There is no treatment, and you can't avoid it. You can transmit it either - you inherit it.

Question: Does anyone have Neurofibromatosis Type 1? I was born Neurofibromatosis Type 1 and I have pain, numbness and pins and needles with it. Does anyone out there have the same illness as me? If so, how are progressing and what are you doing about treatment?

Answer: I have it. I to have the pins and needle feelings and sometimes the numbness, feeling which led to me getting another one of those fun MRI's which they found tumor pressing against my spine around my neck. I had to have surgery. As for treatment, I'm taking nothing expect everyone in a while a pain pill as needed.

Question: can neurofibromatosis type 1 be detected before its symptoms appear? if so, how and when? can neurofibromatosis type 1 be detected before its symptoms appear? if so, how and when? and if there any way to detect a carrier of neurofibromatosis type 1? thanks! :)

Answer: With blood work you probably can. Go to this site for more info http://www.nfinc.org/

Question: does any have Neurofibromatosis Type 1? I was born Neurofibromatosis Type 1 and I have pain, numbness and pins and needles with it. Does anyone out there have the same illness as me? If so, how are progressing and what are you doing about treatment?

Answer: check this site: http://www.inspire.com/groups/neurofibro…

Question: Can i join the Marines with Neurofibromatosis type 1? very low end of it, it doesnt get in the way of life

Answer: No, they like you to be healthy at least when you go in.

Question: Is it common for a person with Neurofibromatosis type 1 to have trouble tolerating heat or to be heat sensitiv Please if there is a doctor out there that can answer this we would be truly grateful, since we no longer have any medical coverage. I have NF1 and simply cannot tolerate the heat. Also the heat seems to cause my tumors to itch. Is this normal? ANY of it?

Answer: I have NF, and I sometimes am sensitive to cold and hot, mostly cold. My leg feels tingly when going into the pool if the temperature is 84 or bellow.

Question: Does anyone else have or have children with Neurofibromatosis type 1 aka NF1? My daugher has NF1 and only has the several cafe'o late spots and macrocephaly and family history of it. I would like to talk to others with children or even themselves that have this disorder. She has had her first MRI and shows no internal tumors at this time but they said that the neurofibromas usually dont form until puberty.

Answer: I actually have (NF)2.Whitch of course is more rare.Also I do not have cafe'o late spots or macrocephaly.I actually did not know I had NF until my right side went numb 3 years ago.The 1st sign of NF was when I was 12 and I wasn't able to open my hand,my radial nerve had shut down.I had MRI after MRI but never an MRI of my Brain whitch looking back it baffels me.Now I am 21 and have had 3 brain surgeries.All Succesful except my first I lost hearing in one of my ears yet they took out 3 tumors.(Thats very typical for NF 2 patients) My 2nd surgery was a tumor behind my left eye(9 hour surgery),I kept my vision thankfully)Except my 3-6 nerves were damaged so I can't move my eye).My last was a the biggest surgery I have had...medulla oblongata...that could have cost me talking and walking.It was a miracle tho everything went well because it was by the brain stem wall.I have a really really really good neurosurgeon and he also is a good person.We will have 30 minute conversations about just daily life,he really cares bout me. I don't mean to scare you,I actually have great news for you.The hardest part of all this was when I was at Texasw Lutheran University and got right side numbness.We did not know why...Even went to hospital and they did not help me at all.Not knowing really was the hard part. That is why it is really good that you are already getting MRI's.When she hits puberty I recommend that she gets one every 6 months.I think everything will be fine if you monitor it.I will pray for your daughter. Last about myself,I have been really strong throughout this process,and I only think I will have to deal with a gamaknife surgery for my last tumor left on my other auditory nerve.(right now it is tiny) Ask me any other questions you have. Artie P.S. I descided to answer q's about this to help other NF patients.In fact,I am going to NF golf tournament in SAn Antonio on Monday,helping others in the community will make me feel better also.

Question: NEUROFIBROMATOSIS TYPE 1 GENE DELETION? My daughter and husband were recently diagnosed with this and I am devastated. I would feel better if I could get proper info on it and perhaps some people who had the NF1 Gene deletion. Can anyone give me information/insight; support? Dr Greene in Crumlin is very nonchalant about it.

Answer: There is no cure for neurofibromatosis, there are studies trying to find test drugs to slow the tumors down and stop them from growing, but its all still in testing stages. I have NF type 1 and I see an NF doctor about every six month. In fact in a few days, I'll be going in the have my MRI scans down, to see where my tumors are, how much they've grown and how many new ones I have. I found out I had NF type 1 when I was 15, I'm 25 now. No one in my family has it.

Question: i have Neurofibromatosis type 1? im 20 years old and i wanted to join the military but they said its to much of a health rick to allow me to join. i don't understand when i've been healthy all my life with no problems

Answer: I have it too, type 1. I'm for the msot part okay, but do have some limitation that would prevent me from joining the military. I've had two surgies to remove tumors. A couple on my arm and then two were crushing agaisnt my spine. I've had a ton of MRI's and I see my neurofibromatosis about every six months to a year. It different for everyone, but I did here there was some kind of law or code or whatever in the military that prevent people with this condition from joining the miliatary. I don't know the reason, you would have to ask them. The only thing I do know is neurofibromatosis, can get worse as the years go by, more tumor can come and the ones already there can grow in size, that's what happens to me. I have a large mass on my leg, which causes me to walk with a limp at time and then I also have tremors. But if you have type one, there a very low cancer rate, now with type 2 that's another story.

Question: does anyone else have neurofibromatosis type one (N.F type 1) if so what symptoms do you have? i have it and would like to find out how other people cope with it

Answer: I have it, and you just have iggy people that make fun of you because of it. Remember what goes around comes around!