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New discussions
Gleevec
- By mk74tom · Posted yesterday at 9:53 pm
- In Living with NF1 · 1 reply
- I am currently on Gleevec theropy and it has worked pretty good in retarding the growth of tumors. But in my case the benfits out weighted the side effects. I have read other people talk about the clinical ...
Please Vote for My pic
- By LumpsandBumps · Posted yesterday at 8:30 pm
- In Off-Topic · 5 replies
- I submitted this pic for a Jones Soda label. http://www.jonessoda.com/gallery/view.ph p?ID=1097590& Please Vote and Have Your Friends and Family Vote. Thank You, Jerry ...
PRAYER
- By pjkd · Posted yesterday at 7:10 pm
- In Living with NF1 · 0 replies
- Every one that has nf or has a family member that has nf you are in my prayers every day ...
Trust
- By appledumpling · Posted yesterday at 6:49 pm
- In Living with NF1 · 2 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 ...
Neurontin vs Ibuprophen
- By NFmomm · Posted yesterday at 6:39 pm
- In NF1 and children · 3 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 ...
Happy Thanksgiving
- By Irishlady79 · Posted yesterday at 6:23 pm
- In Off-Topic · 4 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 ...
What are CAL's?
- By casseyb · Posted yesterday at 9:53 am
- In Living with NF1 · 3 replies
- I've heard a few people mention them in a couple of forums. What are they? And how can they be described? I'm not sure if I have them but I might so I'd just like to know ...
early development young girls
Need other parents advice.....please!
- By DWNF · Posted yesterday at 2:52 am
- In NF1 and children · 8 replies
- My daughter 8yrs has several CALS and lots of groin freckling and we are currently waiting to see Professor Haan at the Genetics Unit. Our pediatrician highly suspects NF1. She is suspected as a spontanious ...
SKIN PROBLEM
- By baileysboots · Posted November 23, 2009
- In Living with NF1 · 0 replies
- I have a rather large tumor growth on my calf that has affected blood circulation and made injuries such as a scrape very difficult to heal. The skin is very dark, large scaley and leathery. Usualy there ...
Tumors on the optical nerve
- By Guccirushgirl · Posted November 23, 2009
- In Living with NF1 · 2 replies
- I was born with NF1 and my tumors have always grown on my optical nerves. Does anyone know if they could remove them without me going blind? My parents never operated me cuz with some research, they found ...
Skin Cancer Possiblity
neurotransmitters
- By NFinNO · Posted November 23, 2009
- In Living with NF1 · 3 replies
- Does anybody happen to know where I can find info re: NF-1 and out-of-balance neurotransmitters? Thanks. NFinNO ...
anyone else tired
- By TwylaWarner · Posted November 22, 2009
- In Living with NF1 · 11 replies
- So I have NF1, I go to the doctor Monday for blood work, I am so tired all the time.. I can be fine one minute and then just dead tired the next. I sleep good at night so I know its not from not getting ...
Tumor On A Nerve?
- By casseyb · Posted November 22, 2009
- In Living with NF1 · 2 replies
- I believe I have a tumor, or from some research a ButtonHole tumor, its a tumor that doesn't stick out but the skin on it is VERY soft. This tumor is on my back on the back shoulder area on the left side ...
Anyone in Minnesota?
Unknown Formations
Living outside of the USA and having NF
- By casseyb · Posted November 21, 2009
- In Living with NF1 · 7 replies
- Hi I live outside the US, I live in The Philippines, pretty much far away from anyone who has NF and I've never actually met someone else who has NF or had a proper converstaion with a person who has ...
nerve sheath tumor pain
Nerve Pain Medication?
- By casseyb · Posted November 21, 2009
- In Living with NF1 · 7 replies
- Is anyone taking any nerve pain medication like Neuroontin? I have pain whenever the bumps on my body are hit and they can cause an immense pain throughout my body. I've asked another question on here ...
