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Living with NF1
Share your story, find support and information, and discuss symptoms and management of neurofibromatosis type 1 (NF1).
Nerve Pain Medication?
- By casseyb · Posted 7:38 am
- 0 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 ...
Pains in bumps
- By casseyb · New reply 7:32 am
- 2 replies
- I have a fair share of bumps on my body but whenever it is pressed they send this shocking pain throughout my body for just a second. Does this happen with everyone? And is there any way to fix this ...
Strokes and neurofibromatosis
- By TracyDu · New reply 6:36 am
- 3 replies
- I am 39 year old female living with NF, Recently I have experienced 3 strokes in less than 2 weeks apart. Does anyone know if these strokes are related to the NF.. Has anyone else with nf experienced ...
Being in love and having NF.
- By casseyb · New reply yesterday at 8:33 pm
- 9 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 ...
I've just had ED (electro dessication)
- By tresham · New reply yesterday at 8:24 pm
- 7 replies
- On Friday I had ED done on my trunk and back and a few removed from my face. The doctor at Concord hospital (Sydney) is wary of doing ED on the face so he just zapped a few from my chin. I have had 100s ...
Tumor in stomach??????
- By Jaylasmom · New reply yesterday at 3:39 pm
- 8 replies
- Ive been having some pain in my stomach on the right side for a while now. These past 2 days it feels like theres some type of mass in there. This has bothered me before I was diagnosed and I thought ...
living NF1/NF2
- By HANDSARMSTRONG · Posted yesterday at 2:32 pm
- 0 replies
- I, Leon Armstrong needs a local doctor, I been living with nf1/nf2 for over 50 years & I want to keep living with out too many more syntoms. PLEASE CAN ANYONE HELP. I LIVE IN LONG BEACH,CA ...
trying for ssi or ssdi
- By ccorri78 · Posted yesterday at 12:52 pm
- 0 replies
- any have any help that will help get abouved for ssi easyer ...
appt for genetics
- By mfehr · New reply yesterday at 4:15 am
- 1 reply
- So I have had a partial removal of a plexiform off of the top of my foot, it was done by an oncologist because at first they thought it was a rapid growing cancer even though I told them its been there ...
affected for 8 years
- By Katie85 · New reply yesterday at 4:05 am
- 1 reply
- i was diagnosed when i was 16 when i had a growth removed when i was 16 from my eye and then i didnt really have any problems until i was 19 when i had a growth removed from my chest. then i really didnt ...
Growing up with NF (Some inspiration)
- By casseyb · New reply yesterday at 3:51 am
- 5 replies
- I've lived with NF my entire life, and within the recent years, around the past 5 or 6 years. I developed a "bump" on my forehead. And people have always asked me "Whats that thing on your forehead ...
JUST KEEPING IN TOUCH
- By pjkd · New reply November 19, 2009
- 3 replies
- How is everyone feeling today? Keeping everyone in my prayers. Have a great and wondeful day. Praise God for each new day ...
Finally i will get an awnser
- By mk74tom · Posted November 19, 2009
- 0 replies
- I have been waiting on edge for the past 2 weeks keep getting put of on rather i need to get surgery or not. i finally get an awnser on Dec 3. It been nerve racking they found new tumors and do to location ...
The struggle so far...
- By guilty_spork · New reply November 19, 2009
- 10 replies
- With the crusade atmosphere of late, I thought I'd take a minute to get back to why I'm really here on the site. Finally, after years of pushing and pleading and going from doc to doc, I found a doc who ...
Headaches and pain
- By Quilter2 · New reply November 18, 2009
- 9 replies
- I read daily the discussion and go back and read any new replies. First I must say that this is one of the most compassionate caring group of people I have had the priviledge to know even if it is just ...
A must read
- By DrNiblik · New reply November 18, 2009
- 2 replies
- Hey troops. I was at work today and ran across a book you guys really ought to read. I leafed through it and made me smile. The book is called "The Velveteen Principles-- A Guide to Becoming Real" by ...
Severe headache starting in back of neck
- By GirlA · New reply November 18, 2009
- 16 replies
- Does anyone get headaches starting in the back of neck and head=feels like a lot of pressure, and going into one eye that has an NF on the eyelid? This one is no fun at all. Have no medical coverage ...
Hard times
- By ericr21 · New reply November 18, 2009
- 1 reply
- I ask myself why do i have NF? and how would i take it as a person as i go on in life and learn from it. not many people do not know how hard it can be to be living with nf some times makes it hard to ...
anyone in fl with nf1 or 2 have both
- By flnut38 · Posted November 18, 2009
- 0 replies
- like to see if anyone in fl has the same thing, maybe we can talk about it. thank you ...
just wondering
- By flnut38 · New reply November 18, 2009
- 6 replies
- I know this sounds nasty, does anyone get puss pockets on their bumps, white stuff comes out of mine and the smell is so bad, just wondering , and it feels better when i get ride of the presure.. ty all ...
