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Living with NF2
Share your story, find support and information, and discuss symptoms and management of neurofibromatosis type 2 (NF2).
Ngo oiy ney a, Mahal kita, Saya cinta padamu, Aishiteru, Sarang Heyo
- By jerecare · New reply 11:12 am
- 3 replies
- Are there any Asian Americans on here with nf2? African Americans (I did notice one photo I believe)? Native American? I love to meet&greet with others of other heritages ...
Labor
- By jerecare · New reply yesterday at 7:50 pm
- 40 replies
- I've read a few posts. No one seems to mention what they do for work. Surely you all aren't on disability ...
"suffers"?
- By jerecare · New reply yesterday at 2:53 pm
- 16 replies
- I've been reading posts and several incidences of people asking or saying you/me "suffers" from NF. Who is a sufferer? Why do you choose to suffer with it? Suffer is not the same as living with it. But ...
how?
- By missinghim09 · New reply November 2, 2009
- 7 replies
- how do u help someone that needs it but they won't let you? i'm so depressed ...
ABI
- By jerecare · New reply October 31, 2009
- 3 replies
- Being deaf from NF2, like DUH, of course one is considered disabled under ADA. Now if that person gets an ABI, are they still considered "disabled" under ADA ...
Propolis and Bio 30
- By ttg · New reply October 19, 2009
- 26 replies
- Has anybody heard about this product and tried it? Does anybody know anything about the doctor who is working on it ...
Effect of Birth control pills
- By ttg · New reply October 12, 2009
- 14 replies
- Does anybody know if birth control pills suppress tumor growth in young women ...
NF2 and Leg aches
- By suzyq64 · Posted October 11, 2009
- 0 replies
- I was diagnosed witj NF2 in July and since then I have had 2 surgeries.One to remove 4 tumors from my head and one to remove 2 tumors from my spine T1-T2. It has been 1 month since my spine surgery.I ...
what's going on?
- By KAM111 · New reply October 8, 2009
- 3 replies
- for the past 2weeks my right leg has been hurting. it's been getting worse every day. last night i couldn't even sleep it hurt so bad. it's nonstop pain. and i got this little bump thingie on my leg right ...
CO2 laser treatment to remove fibromas from face
- By nettyj · New reply September 23, 2009
- 18 replies
- I have had lots of little fibromas removed from my face with a CO2 laser, this is a month ago its all healed up, lump has gone but the scar is small and flat but is red, how long should this be red for ...
weight loss
- By cyndie · New reply September 21, 2009
- 6 replies
- has anyone lost weight for no apparent reason? i went to doc and found out that i have lost 7lbs in 3mos....i know it doesn't sound like much, except i used to weigh 118lbs...now i'm 111lbs. i'm not sure ...
Surgery
- By suzyq64 · New reply September 15, 2009
- 8 replies
- Surgery tomorrow the 9th to remove 1 hopefully 2 tumors from my spine.T1 & T2 area...had 4 tumors removed from my head on July 22.2009 Hopefully this is is for awhile.Was just diagnosed July 1st so this ...
Living with NF 2
- By theyrethere24 · New reply September 8, 2009
- 8 replies
- When you watch your 2yr old nephew grow up learning how to balance, i think how much mines going backwards. I worked with a guy who had NF 1 and when I go to get an MRI I find out that I have NF 2. I ...
Oxycodine anyone??
- By cyndie · New reply August 31, 2009
- 7 replies
- my doc just prescribed oxycodine 5mg for pain....he also wants me to take morphine, but my insurance is not covering it. anyways....i was wandering if anyone is taking this and does it help, what side ...
burning up?
- By KAM111 · New reply August 8, 2009
- 24 replies
- does anybody elts burn up? like get so hot at random times that it melts a bag of ice almost instantly? i do. i don't know why. i'm wondering if its just me, or if other people have those moments also ...
Surgery on upper spine
- By Ania · New reply August 6, 2009
- 10 replies
- I’m new to this discussion list but, but my son has been living with NF for 25 years now. What makes more difficult is that my son has also mental disability and cannot tell me what and if anything hurts ...
Scientists, Doctors anf the like
- By Brown-eyed-girl · New reply July 31, 2009
- 6 replies
- Hi there just wondering why is it that the Doctors and everyone in "that" line of work can find medication or what ever to deal with every thing else but NOT NF1/NF2, i mean yeah i am happy that people ...
Surgeons for NF in England
- By yvonnefoong · New reply July 24, 2009
- 3 replies
- Hello everyone. i am a Malaysian student completing my bachelors degree in Psychology through Upper Iowa University's distance learning program. I am planning to pursue a PhD in Clinical Psychology after ...
Making a decision about surgery
- By ttg · New reply July 15, 2009
- 13 replies
- I have a daughter recently diagnosed with NF2. Currently she is asymptomatic but her bilateral tumors are 2.0 and 2.2. My question is to anyone out there, would you reccomend surgery or gamma knife? Has ...
NF and kidney stones
- By Santel · New reply July 9, 2009
- 10 replies
- I am wondering if kidney stones are a part of the NF baggage - have any of you had kidney stones ever? - if so what type NF do you have. My brother and I have had them all our lives - the only ones in ...
