The Neurofibromatosis, Inc. Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group
All new and active discussions & journals
Neurontin vs Ibuprophen
- By NFmomm · New reply 4:17 pm
- Discussion in NF1 and children · 6 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 ...
BIO 30
- By KATIELEEN17 · New reply 3:36 pm
- Journal · 5 replies
- i heard that this bee product could stop tumor growth and could lead to a cure. has anyone tried this product ...
Just another day.
- By LegoJunkie · Posted 3:06 pm
- Journal · 0 replies
- Lately life has been really rough. I have NF2 ( Neurofibromatosis 2 ). And its been getting so much worse these last year, i really am hopen for a better year next year. It seems like i am always maken ...
TMJ surgery on Monday, cortizone injection for hip bursitis on Tuesday
- By NPAIN24-7 · Posted 2:12 pm
- Journal · 0 replies
- My jaw still very sore can not really eat. Doing alot of drinking. Hip still hurts and can not stand on it for more than 5 mins without pain. Start PT on Tuesday. Go back to work as a LPN on a Geriatric ...
good 6 month check up
- By pettythoughts · New reply 2:11 pm
- Journal · 1 reply
- We had a check up w/out films today, and it went well. Austin's changes where very slight. It seems things while progressing, are moving fabulously slow. We only need to do a brain MRI in Jan. to get ...
neurotransmitters
- By NFinNO · New reply 1:00 pm
- Discussion in Living with NF1 · 4 replies
- Does anybody happen to know where I can find info re: NF-1 and out-of-balance neurotransmitters? Thanks. NFinNO ...
thanksgiving day manners
- By Sumatra · New reply 12:51 pm
- Discussion in Living with NF1 · 5 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 ...
kirsty on tv
- By jaykay · New reply 11:18 am
- Discussion in NF1 and children · 1 reply
- Hi ALL, My daughter Kirsty was on the tv last night doing a live chat about an award that she's won and about a spook night that he is doing for chrity tonight. if you would like to watch it pleae click ...
Avastin treatment
- By cyndie · New reply 10:49 am
- Journal · 4 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 ...
Kirsty on TV
- By jaykay · Posted 10:49 am
- Discussion in Living with NF1 · 0 replies
- Hi ALL, My aughter Kirsty waon the tv last night doing a live chat about n award that she's won and about a spook night thst he is doing for chrity tonight. if you would like to watch it pleae click on ...
not having kids because of nf
- By fallingrockinct · New reply 10:29 am
- Discussion in Living with NF1 · 5 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 ...
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 ...
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 ...
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 ...
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 ...
- More »
- New
- Active
- Discussions
- Journals
Sign in to see more
Inspire others
Group leaders
Discussion topics
You
About this group
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.