Active journals

Balance issues

  • By Hippie1973 · New reply 8:37 am
  • 4 replies
  • Is any one else having balance issues. I've been walking with a cane for years now, because I'll just topple over. Here recently my left leg has been wobbly like it wants to give out. I know I have tumors ...

Blood pressure

  • By FBD15 · New reply yesterday at 10:15 am
  • 6 replies
  • I am 62 now , I walk 5 km five days a week , to keep BP in check . Articles on BP and NF1 are co related and they scare me. My doc has prescribed a BP tablet of 5 mg to be taken every morning . Its keeping ...

help what to do went you can go to the bathroom

  • By Nooksack · New reply April 22, 2014
  • 7 replies
  • im cant go poop because im very scacred what to do i try very thing? help me ...

My doughter Diana

  • By oscarminer · New reply April 21, 2014
  • 15 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 ...

My Alarm Clock

  • By Emceeee · Posted April 21, 2014
  • 0 replies
  • Hi all. I am new here. Well, i just have to be somewhere that people can relate what we are going through with my daughter, Alex. She's 15 and was diagnosed with nf1 in my country on 2011. As far as support ...

Miserable life with NF 1.

  • By GabrielSiahJunhao · New reply April 21, 2014
  • 25 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 ...


  • By superlyss · New reply April 17, 2014
  • 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 ...

Miserable life with NF 1.

  • By GabrielSiahJunhao · New reply April 15, 2014
  • 26 replies
  • I am 14 y/o. I got NF 1. It didn't affect me much until I became 13. I got laughed by my friends because of my freckles and big birthmark all over my body. When I quarrel with my siblings, they used my ...

"A wake-up call from a young e-patient: 'I need to be heard'”

  • By John2 · Posted April 15, 2014
  • 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...


  • By KingCrimson · New reply April 14, 2014
  • 2 replies
  • My son I hadto admit to the hospital yesterday they kept him overnight and they want to keep home tonight um I live in a really small town they don't have it anymore allergist about school and there is ...

im sick of want.

  • By Nooksack · New reply April 12, 2014
  • 2 replies
  • i just want this to be over reamove bump im sick of want for the doc to call me and tell went remove it ...


  • By Esikhena · New reply April 5, 2014
  • 7 replies
  • Am Aways Feeling Wick, I Hadly Relate With People Because I Feel Embarrised But I Did't Relent In Finding Solution To This Prob. I Pray God To Grant Us His Grace ...

well did like to know if some one got stuck on stupid.

  • By Nooksack · New reply March 28, 2014
  • 1 reply
  • well to day i went to get my id i for got how to spell my name. i was in the DvE i did eat before i went, and be i want i saw my doc. and told was the b c in my famiy. my uncle die of the big c he had ...

cont...Harmony Rose

  • By Gamom30 · New reply March 27, 2014
  • 3 replies
  • Jan 8 20014 Harmony had Brain surgery to debulk plexiform tumor on right orbital frontal lobe behind eye, reconstruction of eye socket and debulk neurofibroma on maxillary nerve this time we are ...


  • By KingCrimson · New reply March 26, 2014
  • 2 replies
  • My son was in Hosp. Mon.-Th. this week. He had horrible meltdown. No pediatric psyclogists or neurologists in town. Discharged. Have to wait for next meltdown and bring him 60 miles to Chicago. Bullshit ...

Meet Harmony Rose

  • By Gamom30 · New reply March 26, 2014
  • 3 replies
  • Hi , im Julie i live in Ga , i am 31 yrs old , I am the mother to two wonderful children ,Trenton (7) and my baby girl Harmony Rose (2) , Harmony was 4.5wks early ,she weighed 10lbs (which turned out ...

Good news.... Kind of....

  • By amys-lumps · New reply March 25, 2014
  • 9 replies
  • Hello everyone, had a bit of good news the other day that hopefully I will be having 4 tumours removed, 1 from both sciatic nerves, 1 in my neck and 1 in the back of my right arm. But will be done in ...


  • By amys-lumps · New reply March 25, 2014
  • 3 replies
  • I am just curious to know if there is anyone in the uk with schwannomatosis, especially the south east ...

Embaressing surgery

  • By purespirit · New reply March 24, 2014
  • 10 replies
  • Has anyone else had tumors removed from the genital area????? They used Lazar and some cutting,,,I would not wish this on anyone,,the pain is horrible today(day 6 after surgery) day one was burning but ...


  • By lautrelle · New reply March 23, 2014
  • 16 replies
  • I will be going this morning for cancer testing-- please say a prayer that all is well with me and I do not have cancer ...

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