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Advise
- By Pepsigirl · New reply 9:35 am
- Discussion in Living with NF1 · 1 reply
- I need some advise. i have a lump on my face. I notice it is getting larger, and starting to hurt. when it hurts it feels like it is going through all of my left side of my face. I do not know what to ...
Neurontin vs Ibuprophen
- By NFmomm · New reply 3:32 am
- Discussion in NF1 and children · 4 replies
- Hi, My son's doctor would like him to try neurontin for nerve pain after a surgery. The surgery to remove a tumor and decompress others on his spinal cord in his neck. It was almost 3 months ago now ...
Removing big tumors
- By tanee · New reply 1:20 am
- Discussion in Living with NF1 · 13 replies
- Has anyone have the removal of tumors from their body that have caused some kind of abnormality? I am a female and have a tumor underneath my lower left back side, This make my body look unsymetrical ...
not having kids because of nf
- By fallingrockinct · New reply 12:20 am
- Discussion in Living with NF1 · 4 replies
- How many of us have based our decision whether to have or not to have kids because of our condition?Based on my feelings I just didn't want to take the chance of my kid or kids coming down with that ...
Urinary tract infections
- By GirlA · New reply yesterday at 10:59 pm
- Discussion in Living with NF1 · 1 reply
- For the past 10 years or more I have been getting frequent urinary tract infections as well as pain in the area of the kidneys=occasionally I will even not be able to urinate for a couple of days or longer ...
thanksgiving day manners
- By Sumatra · New reply yesterday at 10:52 pm
- Discussion in Living with NF1 · 3 replies
- I really don't want to discuss my NF today with my family. I know they are concerned, but they have no idea as to what I'm really saying. I feel they are asking it just to be polite. Would it be OK for ...
Avastin treatment
- By cyndie · New reply yesterday at 9:14 pm
- Journal · 3 replies
- i started avastin treatment yesterday 11/24/09. first i had blood drawn and had to pee in a cup....which i found out i'll have to do this before every treatment. then they put in an iv and pumped in the ...
NF1 - Children
- By little-laura · New reply yesterday at 8:17 pm
- Discussion in NF1 and children · 39 replies
- Hey I was very angry yesterday when discussing my disease with a recently pregnant friend and her mother. The both agreed with each other on this, which made me have to walk out before I said a few harsh ...
Trust
- By appledumpling · New reply yesterday at 5:46 pm
- Discussion in Living with NF1 · 5 replies
- I was in a relationship with a guy that said he would never hurt me and understood about NF. Needless to say he hurt me more than anyone can imagine. Does anyone have advice concerning how to learn to ...
Good News
- By dragonfly1980 · New reply yesterday at 5:40 pm
- Journal · 2 replies
- Well I have been fighting for insurance for many years. I finally got it. It is state insurance but it is insurance. I am so relived. I had to write my congress man but it worked. Just for all of you ...
Avastin treatment starts on Tuesday
- By cyndie · New reply yesterday at 4:25 pm
- Discussion in Living with NF2 · 6 replies
- Well, i start Avastin treatments on Tuesday.....I'm excited. I hope that it helps me.....my doc thinks it will. has anyone out there had Avastin treatments? what can i expect to experience ...
BIO 30
- By KATIELEEN17 · New reply yesterday at 4:22 pm
- Journal · 4 replies
- i heard that this bee product could stop tumor growth and could lead to a cure. has anyone tried this product ...
Going back to NIH!!!
- By swtlilwamom · New reply yesterday at 3:28 pm
- Discussion in Living with NF1 · 4 replies
- I just got a call from the folks at NIH in Maryland, and they are inviting me back for surgery to remove several GLOMUS tumors! I cannot wait! These tumors have bothered me for a long time, and my Drs ...
How people treat you is their karma; how you react is yours.
- By muffinturner · New reply yesterday at 3:08 pm
- Discussion in Off-Topic · 2 replies
- Understandably, there is a lot of anger in these threads. Anger at a situation is natural but some of the anger towards other people is a bit much. Everybody has an issue to deal with. Try to think of ...
Being in love and having NF.
- By casseyb · New reply yesterday at 2:58 pm
- Discussion in Living with NF1 · 20 replies
- I've always been worried that no one would fall in love with me cause of my NF. I always thought they would be disgusted by it or decide to leave me for it, so its always hard trying to find a mate when ...
Can't get it out of my head
- By banana1946 · New reply yesterday at 2:46 pm
- Discussion in Living with NF1 · 19 replies
- So does anybody else have NF on their mind multiple times a day. I can't seem to get it out of my head and it seems to get worse. I think about it at work, when at the movies, while working out, while ...
tumor removed.... months later still lots of pain
- By lezlierules · New reply yesterday at 2:18 pm
- Journal · 2 replies
- i had a fibroma removed frim my right foot... in june of 2008 and i STILL have lots of pain. i cant believe it hurts this bad sometimes. i cant even put on my shoe cuz if i happen to touch the scar it ...
Happy Thanksgiving
- By Irishlady79 · New reply yesterday at 1:13 pm
- Discussion in Off-Topic · 7 replies
- Just a fast note, to wishing very one a very Happy Thanksgiving. I'll be hosting Thanksgiving this year, And the cooking will start to tomorrow with the making of Scotch eggs a easy but a pain to make ...
sleep paralysis and narcolepsy
- By STLdude314 · New reply yesterday at 12:26 pm
- Discussion in News, research and advocacy · 1 reply
- Does anyone else experience sleep paralysis and/or narcolepsy? I do and I wonder if it is related ...
in lieu of medicine
- By jerecare · New reply yesterday at 10:43 am
- Journal · 19 replies
- Orange juice was my elixir of choice for a long time. We had to get the off-brand kind to save a few pennies, but it wasn't that good. Usually I will eat/drink anything (except alcoholic), but I've become ...
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The Neurofibromatosis, Inc. Support Community connects patients, families, friends and caregivers for support and inspiration. The Neurofibromatosis, Inc. Support Community is sponsored by Neurofibromatosis, Inc. in partnership with Inspire.