I've never posted before but my husband has NF 1 and he just found out that he may have a Sarcoma. They are not giving us any answers until they get the...
my son died with nf2 and was born with it started as nf1. spots and when first tumor was found was four years ago on brain behind left eye. he had 2 tumors on...
Hi, we actually joined this group awhile back because a doctor had brought up the possibility. I discounted it thinking "no way...this doesn't seem like us at...
Everyone's ranges of severity vary. It sounds like you do have it. I myself now 29 never knew I had NF until 17. I always had some of the cafe spots but thats...
Hello all. I do not have NF. I have a daughter, 4 years old, with moderate functioning autism and a brain tumor on her optic chiasm and pittuitary gland and...
Ok after reading through some of your posts I am begining to think that maybe I should talk to our physicians about testing. Both Hadley and I have a few cafe...
hi sorry about your daughter and hope all goes well hope u been praying and dont stop. my son had 3 tumors in his brain and 2 on spine but there was no helping...
I read your concerns and I know where you are comming from. It can be a little scarey when you can not tell a cyst from a development of another tumor. When my...
hi, be very concerned about your head and yes insist they do mris . my son started with bad headaches and then they opperate 2 weeks later he died not to scare...
Hey Trish sounds like fibromas just get them checked, I am kinda going through the same thing My daughter just turned a year old and she is showing signs of nf...
Hi Stacey! I am sorry it took so long to reply to your message. I saw it and wanted to reply, but as we all know this is such a busy time...Yikes! But, I...
Hi Trish! I just wanted to add a few extra comments on your post. First, the itching is common....I know myself, and family memebers who have nf say that the...
Hey for anyone that does not know this if you go to www.nf.org you can search for specialist in this field on the web site there and also a lot of other...
I am here on behalf of my aunt. She has been very sick for a year now with all sorts of health problems. She finally found out what is wrong with her. She has...
Hi 3 years ago I also had a tumor on my spine it was between C2 and C3 It was found on the Monday and i had it removed on the Wednesday. I also was having...
Hi. I new to this group. I have a 8 year old son with NF type 1. He has a trach and is on a ventilator. He has a rather large tumor that is wrapped around...
Carolina...that is so nice of you...after I read about your son Amy, I printed your message out....I have tons of little fibromas on my tummy, back, underside...
Angela, I've been out for a while, but just read your post and wanted to know how your little girl was doing. I'll check the caring bridge site, but wanted to...
i am so srry to here about your son my son had the same promble asYOU THE DOCTOR DID SURGERY ON HIM HE HAD A BIG TUMOR THE SIZE OF A BALL. THEY TOLD ME NOT TO...
Thank you for writting. The doctors tell us when we ask about what his prognosis is that he shouldn't still be here now, so they don't know what to expect as...
TY I hope you have a wonderful christmas and a Happy New Year ... __________________________________ Do you Yahoo!? Read only the mail you want - Yahoo! Mail...
i hope every one has a great christmas and the best of the up coming new yr i am sorry if i made any one made the last yr for my neg feed back about...
Hello all. I've been lurking for a while...I posted a few weeks ago aobut suspecting NF in my daughter and even in myself. We have our weekly oncology appt...
Hello, I was diagnosed with NF, by a biposy of one of my tumors. Plus, they were able to determine that I had it by other symptoms. However, we wondered if I...
Dear everyone May l wish you all a peaceful 2005. Please spare a thought for the 124 000 + who have died in the indian ocean earthquake / tidal wave and for...
Hello,I am Kim and I have NF1.I have been having back trouble due to spine tumors.Doctors here don't know about Nf so they wont do anything.Anyone else suffer...
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