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sleep and fentanyl
- By kala · New reply 12:22 am
- Journal · 6 replies
- I could'nt sleep again last night ,I 'm sure it's the fentanyl patches.Every time i change it (every 3 days) i can't sleep that night i don't know if that's because it's stronger then or not but it's ...
bleaching CALS?
- By Jill_Nic · New reply 12:04 am
- Discussion in Living with NF1 · 16 replies
- this may sound a little wierd but has anyone ever tried to bleach or whiten cafe au lait spots or the freckling with skin creams? Ive been thinking of trying it on a few CAL spots that are noticable and ...
Purple Tumor
- By Basenji53 · New reply yesterday at 11:56 pm
- Discussion in Living with NF1 · 19 replies
- Has anyone had a tumor turn purple? I had one turn purple ...
Trust
- By appledumpling · New reply yesterday at 11:55 pm
- Discussion in Living with NF1 · 1 reply
- 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 ...
Can't get it out of my head
- By banana1946 · New reply yesterday at 11:51 pm
- Discussion in Living with NF1 · 15 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 ...
Neurontin vs Ibuprophen
- By NFmomm · New reply yesterday at 11:32 pm
- Discussion in NF1 and children · 1 reply
- 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 ...
Gleevec
- By mk74tom · New reply yesterday at 11:18 pm
- Discussion 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 ...
Need other parents advice.....please!
- By DWNF · New reply yesterday at 11:06 pm
- Discussion in NF1 and children · 7 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 ...
Anyone in Minnesota?
anyone else tired
- By TwylaWarner · New reply yesterday at 9:28 pm
- Discussion 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 ...
Happy Thanksgiving
- By Irishlady79 · New reply yesterday at 9:28 pm
- Discussion in Off-Topic · 3 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 ...
Please Vote for My pic
- By LumpsandBumps · New reply yesterday at 8:57 pm
- Discussion in Off-Topic · 1 reply
- 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
- Discussion 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 ...
Hello
- By appledumpling · Posted yesterday at 6:40 pm
- Journal · 0 replies
- Hi everyone, It has been a long time since I have visited he chatroom. Everything is going great expect for my personal life ...
I just dont know what to do
- By ButterFlyGirl86 · New reply yesterday at 3:06 pm
- Journal · 5 replies
- I know its going to happen 1 or 2 times a year and I was thinking That well it has not happen this year yet that i am going to be good and its not going to happen. I am talking about my Antoimmune hepatitis ...
How bad did you turmors grow during pregnacney/
- By banana1946 · New reply yesterday at 12:18 pm
- Discussion in NF1 and pregnancy · 9 replies
- Hello, My husband and I are planning on getting prego soon. We are going to do genetic counseling and gene selection to ensure our child wil not have NF. Just curious to all the NF women out there who ...
What are CAL's?
- By casseyb · New reply yesterday at 11:15 am
- Discussion 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
What Is The Differance Between NF 1 & NF 2
in lieu of medicine
- By jerecare · New reply yesterday at 7:12 am
- Journal · 14 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 ...
