Hi Everyone Its been ages since ive visited the site but im after some info if possible I have NF1 which is pretty bad covering my entire body and of course...
Hi Paul, How about swimming trunks and a tee shirt.... Jenny ... From: polarman47 To: neurofibromatosis2@yahoogroups.com Sent: Wednesday, November 09, 2005...
You have a great attitude carolinacpnter, I have always been depressed. I blame it on my NF. Can anyone, all of you who love yourselves please tell me how to...
... I think we ALL get depressed about having this disorder. Some days are worse than others....some real bad, some very good. We have to remember to look...
Thanks Rita, That was well said....almost my exact emotions about this difficult to live with disorder...I have had some removed but the doc did not do a very...
Hi Folks its so good to hear from people who are in the same predicament. Firstly Jenny yes i wear a trunks and a vest in most places, but unfortunately there...
Hi Paul, I didn't think about the fact that most places don't want you wearing a tee in the pool. I know what you mean about the kids. I wonder if we all get...
I have been reading the messages that have been exchanged the last couple of day. I am 31 years old and was dia. w/nf at 4years old. The last 10 years or so...
Tammy I get all those same feelings.......sometimes hopeless....I have some good days, some bad days, some worse....I ma married and my husband accepts it...
Jenny I live in Texas, my doctor is Dr. Rodriquez in San Marcos, (San Marcos Laser Center). But you shoulnd't have to look for a dr. Your insurance will cover...
Tammy, I understand that my insurance will cover it but I need to find a good doctor who has experience in removing neurofibromas with the Laser. That is what...
Tammy Where do you live? Melissa ... Tammy, I understand that my insurance will cover it but I need to find a good doctor who has experience in removing...
Does anyone live in Michigan or close to Michigan that has a good Doctor who is knowledgeable in removing neurofibromas with a Laser...? Chicago ? Or another...
Hi Paul I just wondered where in the Uk are you. I also live in the UK. Mel polarman47 <no_reply@yahoogroups.com> wrote: Hi Folks its so good to hear from...
Sorry, i mean Jenny where do you live? ... Tammy, I understand that my insurance will cover it but I need to find a good doctor who has experience in removing...
I live in Michigan Melisa....how about you ? ... From: melissa_b_murphy@... To: neurofibromatosis2@yahoogroups.com Sent: Friday, November 11, 2005 1:46...
Jenny, The laser surgeon that i go to is not a NF doctor or an neurologist. Most Laser surgeons are experenced with removal of fibroma's caused by nf. If I...
I think that NF and depression go hand in hand - I know I am on meds for depression and they have tried cutting it down and it just doesn't work. Would explain...
I am on meds too and don't think I can ever go without them. I haven't really found anything that works to well but takes the edge off a little..... ... From:...
November 11 is Remembrance Day here in Canada and Veterans Day in the US. Below is a link to an amazing video and song by a Canadian about his experience one...
I too, have lots of little bumps on my back and torso, and hardly any external ones anywhere else. not sure why that is... I worry about it more too, I think,...
Ditto for that... would like to get a good doctor to do it. Only problem is, I need to try to find someone w/in my insurance. Do insurance companies cover...
Hello, does anyone know when NF usually starts to show up in babies/kids? we just had our baby last week, and he has no symptoms, but then babies are usually...
Nora~ From what I am informed of, the cafe spots are a sign of NF and can appear at birth. My sister had other complicatons and signs as she had problems with...
Nora - those little bumps are referred to as erruptive fibromas - they are generally happen to women in the late 20s and early 30s. They come out very quickly...
Thanks Nora, It must help a lot to have a parent and see that it's OK. I know people look beyond our NF I think we are the ones who have to learn to accept it....
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