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Welcome to Inspire!
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Journals
Joint pain
- By NPAIN24-7 · Posted 3:42 pm
- 2 replies
- Does any know if joint pain is related to NF1. Doc has rthritic done all these blood test for arthritis and they all came back normal. x-rays show some arthrtic changes. I have a very large bone spur ...
first neurology apt on 30th
- By Katie85 · Posted November 18, 2009
- 2 replies
- i am very nervous for my first apt. i am kinda scared a bit, i have been in pain for the last year so it is about time to figure out what is causing me so much pain. I can count at least ten tumors. was ...
Dr Appoinyment
- By E-Hagen · Posted November 18, 2009
- 0 replies
- Had my Dr appointment in Indianapolis at I.U. Hospital,it was not very good news,discovered a new tumor under my sternum about the size of a patato,have been experiencing trouble breathing a little and ...
natashas research
- By joslyn · Posted November 18, 2009
- 0 replies
- natasha as to go hospital on tusday for blood test,its for research into nf1,are doctor first gave natasha medication and sent her home,we moved back to our home town 2 years later and i took her to a ...
EEOC and Discrimination
- By FLiceman · Posted November 18, 2009
- 0 replies
- I contacted the EEOC in September, and due to heavy volume, they called me back last week. I was interviewed recently, and they will proceed with my case. Very unique, as I had to go over the nature of ...
Beliefs
- By jerecare · Posted November 18, 2009
- 2 replies
- Many of you might have the impression that I have no problems, life is hunky-dory from a wordly perspective. That is not the case. There are many things I wrestle with, both physical and mental. I don't ...
me n my son
- By mark_elvis_hardacre · Posted November 17, 2009
- 0 replies
- HI My name is mark n im 20 years old i av nf n my son who is 1 has jus recently been diagnosed with this 2. does any1 else know what complications come with this as i am scared for little boy, if so please ...
I just dont know what to do
- By ButterFlyGirl86 · Posted November 17, 2009
- 0 replies
- I know its going to happen 1 or 2 times a year and I was thinking That well it has not happen this year yet that i am going to be good and its not going to happen. I am talking about my Antoimmune hepatitis ...
I never met a doctor
- By jerecare · Posted November 17, 2009
- 13 replies
- I never met a doctor who I really liked and respected, at least initially. There's an issue of forgiveness that comes in later. That is for another journal entry. I never met a doctor who didn't act god-like ...
macrobiotic cure???!!
- By KATIELEEN17 · Posted November 16, 2009
- 3 replies
- Has anyone tries the macrobiotic diet?? My surgey didn't work and my eye doctor recommended it. I hear it has been know to cure many things including tumors and cancer ...
Testament
- By jerecare · Posted November 15, 2009
- 0 replies
- My ankle hurt so bad I was up all night. My wife prayed and loved me and massaged me. Then my hip started hurting something awful. Felt like it was dislocated. Still I went to go hand out food boxes ...
Proton Therapy treatment for NF tumors?
- By mie · Posted November 15, 2009
- 0 replies
- Is there anyone who has been Proton Therapy treated for NF tumor ...
would like to talk with othercaregivers
- By kellyjoe · Posted November 15, 2009
- 0 replies
- my husband is 41 and recently had a chemical spill at work that left him with a brain injury causing a type of dementia we have a 20 month old daughter looking for other caregivers to talk with that might ...
Look-alike Phenomenon
- By jerecare · Posted November 15, 2009
- 0 replies
- As I get older, it seems like people are looking the same. I find myself saying "hey, you look like someone." I meet sign language interpreters frequently. I met "Glenn Close", "Johnny Depp". Even have ...
- By LumpsandBumps · Posted November 13, 2009
- 3 replies
- I tweeted Dr. Jim Sears from the show The Doctors and here is what He tweeted back @DrJimSears @THEKNOTTYMAN I take it from ur name that u have first-hand experience w/ NF... Seems like u hav a good attitude ...
Can't sleep...
- By guilty_spork · Posted November 13, 2009
- 3 replies
- Insomnia sucks. Its nights like tonight that my mind wanders back over the years, over the nights like tonight that seem so close. I look back at those moments like old photos and stare at the kid in ...
Is there anyone who has, or has experience in particle therapy?
- By mie · Posted November 12, 2009
- 0 replies
- I have a tumor in the optic nerve and were referred for radiotherapy, since it is a sensitive area I have investigated what other options there are, I found a report on particle therapy, which sounds ...
Removal of Neurofibromas
- By CRUEHD · Posted November 11, 2009
- 4 replies
- I just had 3 bumps removed from my arm today. This is the first time I actually saw then entire process from start to finish. It was pretty wild. After having major surgery last year, I never knew the ...
Is there anyone who has had radiotherapy to their optic nerve?
- By mie · Posted November 11, 2009
- 1 reply
- I was told at the hospital today that the tumor I have on the optic nerve is beginning to press, they will not operate it because they think there is too much risk in it, but instead refer me to radiation ...
A Run For A Cure>>>
- By The-Dreamer · Posted November 10, 2009
- 0 replies
- Nick Folk, the Dallas Cowboys Pro Bowl kicker, has partnered with the Children’s Tumor Foundation to “Kick for a Cure†to neurofibromatosis (NF), a progressive disorder his 11-year-old cousin, Blake ...
