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Living with NF1
Share your story, find support and information, and discuss symptoms and management of neurofibromatosis type 1 (NF1).
Is gene transplant the cure?
- By Jill_Nic · Posted 4:22 pm
- 0 replies
- Im just wondering what everyone thinks about this. Would a gene transplant cure NF? It has been done ...
Neuromas under the nail
- By debcal · New reply 3:06 pm
- 6 replies
- Hello Everyone: I was wondering if anyone has had experience with their neuromas growing under their nails. My ortho hand doc seems to think that is one of the reasons for the severe pain that I have ...
Vitamin D=Sunlight?
- By sweetiecat · New reply 1:16 pm
- 13 replies
- I have a question and I'm hoping you all can help me with it. When I saw the neurologist at Cincinnati Children's he wanted me to take mega doses of Vitamin D. Like 50,000 units a day for 30 days. He ...
Did any one tried Doctor Maruta's Bio30
- By godisgreat · Posted 1:15 pm
- 0 replies
- Hi All, I have been suggested by Dr Maruta that Bio30 helps in tumour prevention. Can anyone here please share if they have tried this medicine Bio30 and has it reduced the tumour growth for NF1 patients ...
Can't rember
- By Liz32 · New reply 10:43 am
- 2 replies
- A while ago there was a discussion on a cream that help with fibromas and it begn with the letter A. Dose any ony rember what the name is ...
Speach
- By mk74tom · Posted 12:18 am
- 0 replies
- I always had a speach problem with sluring. But I noticed lately I am sluring a lot more and starting to studder and repeat simple words. I know some of the slurng is due to location of new tumors in ...
NF Symposiums - is anyone else frustrated?
- By wpcooper · New reply yesterday at 11:22 pm
- 2 replies
- Hello: I just wanted to put something out there I was curious about. I have gone to a few of these symposiums which are usually held at hospitals. I went to one in the bay area a few years back and then ...
HELP ME WITH NF1
- By jimmy559 · New reply yesterday at 6:51 pm
- 10 replies
- OK PEOPLE. THE LAST TIME I WENT TO SEE A DOCTOR. WAS AGE 12..HAVENT BEEN SEEN SINCE.CAUSE I HAD NO SYNTHOMS. 30 YEARS LATER.I GET THESE SHARP PAINS.IN MY FINGERS' AND MY LEG. N SOME TIMES MY FEET. I TAKE ...
After how much time does the bumps grow back if one get it removed
- By godisgreat · New reply yesterday at 5:46 pm
- 15 replies
- I have read that many people have got their bumps removed through surgeories....can you pls tell me that in case the bumps grows back , after how much they grow back normally..also wht is the amount of ...
If you have NF and are against Health Care Reform - you are nuts.
- By twotimes3233 · New reply yesterday at 3:37 pm
- 26 replies
- I had to jump through hoops and actually change my "health care provider" (what a crock that term is - more like the thug with a gun that takes my money and then wants to give nothing in return) to get ...
A Little Insecurity
- By noangel1987 · New reply yesterday at 10:52 am
- 9 replies
- Sometimes I get a little self conscious considering the fact that I have NF. I often feel as if no one will find me attractive because of the visible bumps I have b/c of the disease. There have been sometimes ...
Reminder
- By wpcooper · Posted November 6, 2009
- 0 replies
- There is a workshop tomorrow at the Children's Hospital in Madera from 9 to 11 a.m. If you are in CA take the 41 and exit on Children's Blvd. See my previous post or email me if you want more information ...
anyone out there with NF c
- By Krissy_49347 · New reply November 6, 2009
- 4 replies
- anyone out there with nf care to chat. you can reach me on yahoo messenger at krissy_49347 ...
Claustrophobic in my own skin
- By Anjee_w · Posted November 6, 2009
- 0 replies
- Have you ever felt the weird sensation of being claustrophobic in your own skin? I remember it first happening when I was 8 about the time I was diagnosed with migraines. I use to get them a lot when ...
Nf and beta thalasemia trait
- By RikaIdris · New reply November 6, 2009
- 2 replies
- Just diagnosed that i have beta thalasemia trait. Any of you have both NF and beta thalasemia trait ...
HEAD ACHES AND NUMBNESS AND TINGLING
- By pjkd · New reply November 5, 2009
- 9 replies
- Does any one ever get the head aches and numbness and tingling in there hands and legs. When I get head aches it feels like my head it going to pop off. My leges even get tingling and numb ...
HAS THIS HAPPENED TO ANYONE ELSE
- By hippiemamaof3 · New reply November 5, 2009
- 2 replies
- MY HUSBAND HAS HAD A WEAK ARM FOR WEEKS, HE HAD CT OF HIS SHOULDER AND NECK WITH NO RESULTS, BUT THEY SAW SOMETHING THAT DIDNT LOOK RIGHT AND SENT HIM FOR 2 MRI'S IN 2 DAYS THEN TOLD US IT LOOKS LIKE ...
32, and i live with nf
- By disciple4life1998 · New reply November 5, 2009
- 4 replies
- i am a 32 yr old man, i was diagnosed at about 5yrs old with nf and i have a few complications thus far, but as i have done my own research i have learned a lot of interesting things. i do have a slight ...
finding assistance
- By elim · New reply November 5, 2009
- 2 replies
- i have nf 1 and am trying to find assistance with paying for my medications while i am in the donut hole as insurance companies call them ...
only one in my family with nf
- By mattdclarke1 · New reply November 4, 2009
- 70 replies
- hi i would like to know if there is anyone else who is the only one in there family to have nf because i am please let me know if your out there ...
