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Can someone not get any bumps from having NF

tay6973
  • By tay6973 · New reply 8:25 am
  • Discussion in Help desk · 6 replies
  • is there any way that someone cant get as much bumps as people usually have ? Im 20 & i only have 2 very small bumps on my body; one on my left leg and another on my lower back. I have freckles all over ...

Word association game

Amzy
  • By Amzy · New reply 8:09 am
  • Discussion in Off-Topic · 5687 replies
  • So I have seen everyone seems to like the song game so i was wandering if yous would like to try the word association game It's a similar style to the song game, But here is how to play Once an original ...

optic nerve retina coloboma

Kivalina
  • By Kivalina · New reply 7:43 am
  • Discussion in NF1 and children · 1 reply
  • My 4 month old grandson just see eye doctor and he has this optic nerve retina coloboma ,Is it liked with NF? His Mother and Brother and Grandma (Me) all have NF ...

Black spots in tumors

Kivalina
  • By Kivalina · New reply 7:32 am
  • Discussion in Living with NF1 · 3 replies
  • I had a few tumors start itching badly last night,Scratched them and noticed hard black things in them,they sometimes come out if pinched and its like a rock.What could this be ...

UPDATE

superlyss
  • By superlyss · New reply 7:23 am
  • Journal · 3 replies
  • Okay so its been 3 years since i been on this site... i don't know want to say but here it goes... im about to be 20 and im scared. i have a dog whos my best friend. (i also have human friends too lol ...

? on neurofibromas

Shawn75
  • By Shawn75 · New reply 7:07 am
  • Discussion in Living with NF1 · 12 replies
  • do they they come an go like goose bumps depending on weather when it hot few pop up on arm when cold there gone they dont itch or bother they look like hives kinda ? Thank you ...

THE SONG GAME!!! Revisited

Miss-No-Name
  • By Miss-No-Name · New reply 6:59 am
  • Discussion in Off-Topic · 7225 replies
  • GAME RULES: *One person posts a song *Then the next person takes a WORD from that song & adds another song which contains that same word. example.. "Don't STOP believing" Journey (next person) "STOP In ...

Miserable life with NF 1.

GabrielSiahJunhao
  • By GabrielSiahJunhao · New reply 6:53 am
  • Journal · 9 replies
  • Thanks to those people that gave me some advice on my previous post. I am feeling better and longer have the thoughts of suicide. That's very immature. Me having neuro is the fact, but I don't accept ...

UNDER COVER

Artie_Dee
  • By Artie_Dee · New reply 5:32 am
  • Discussion in Off-Topic · 50 replies
  • When we were playing the "Same Title. Different Song" game, a few of us posted songs that were "covers." That is, the same song performed by two or more different artists. For example; ROLL OVER BEETHOVEN ...

? Blood Platelets

Shawn75
  • By Shawn75 · New reply 5:16 am
  • Discussion in Living with NF1 · 8 replies
  • does any one have crazy Platelets /Low Blood Platelets or Blood Platelets that go up an down up an down ? 52 103 88 , 116 129 87 to 44 month years in between them ...

DIFFERENT SONG / SAME TITLE

Artie_Dee
  • By Artie_Dee · New reply 5:14 am
  • Discussion in Off-Topic · 47 replies
  • This game is pretty self-explanatory. We simply post different songs which have the same title. We can have as many as you like for each title. We can add similar titles to other people's posts as well ...

liver Bicpy next week

Shawn75
  • By Shawn75 · Posted 5:01 am
  • Discussion in Living with NF1 · 0 replies
  • I seen youtube videos on it ,,, Had a MRI last week was clear an few month ago hat TC scan of liver cause my Alkaline phosphatase where over 250 besides that it was fine no signs of neurofibromas spleen ...

After Treatment

summer09
  • By summer09 · New reply 3:26 am
  • Discussion in Living with NF1 · 1 reply
  • I hope I can get some advice from people who have had electrodisection or such surgery. I had treatment on my face, all over my cheeks and neck. It looks pretty intense. I was told by the doctor to wash ...

Up all night

buzwarped
  • By buzwarped · New reply 12:27 am
  • Discussion in Living with NF1 · 4 replies
  • was up all night due to phantom pains and phantom sensations. lost my leg above the knee last oct. been trying mirror therapy and meds, any amputees out there with advice that can help me?left out other ...

A LITTLE BIT OF CHEER

Auntmala
  • By Auntmala · New reply 12:16 am
  • Discussion in Living with NF1 · 22 replies
  • THESE POSTS I MEANT TO INSPIRE AND GIVE YOU A LAUGH , THEY CUTE SO POSITIVE I HAVE TO SHARE THEM THANK YOU YOU'RE NOT MEANT TO BE RELIGIOUS I WILL TRY TO POST DAILY I HOPE IT WILL GIVE YOU A BOOST DAILY ...

My doughter Diana

oscarminer
  • By oscarminer · New reply yesterday at 8:29 pm
  • Journal · 14 replies
  • My daughter Diana has NF2 and it is in places they cannot operate on in her brain and on her spine. Knew she had some lesions on her upper spine but during her last they found 2 new 3mm in size on her ...

BEFORE AND AFTER

kerinkerry
  • By kerinkerry · New reply yesterday at 6:24 pm
  • Discussion in Off-Topic · 10 replies
  • I like all the song games and word games and I'm a big fan of wheel of fortune. I thought it would be fun to play a before and after game such as 1st person would say : tv stand 2nd person : up straight ...

Just diagnosed as an adult

shankomatic
  • By shankomatic · New reply yesterday at 3:01 pm
  • Discussion in Newly diagnosed with NF1 · 14 replies
  • I am a 43 old adult male that just recently found out that I have NF1. I had several café spots as a child and the doctors passed them off as birth marks. I had some learning problems as a child but nothing ...

I have a question

cindeezie
  • By cindeezie · New reply yesterday at 2:14 pm
  • Discussion in NF1 and pregnancy · 3 replies
  • Would taking prenatal vitamins affect a woman with nf1 ...

Bumps on children

Angstl
  • By Angstl · New reply yesterday at 12:37 pm
  • Discussion in NF1 and children · 15 replies
  • Has anyone noticed bumps on their young children? How old were they when you first noticed them and where were they located ...

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The Neurofibromatosis Network Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Neurofibromatosis Network, an Inspire trusted partner.