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neurofibromatosis2 · A place for people with Nf to get to know others
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Messages 6358 - 6387 of 6797   Oldest  |  < Older  |  Newer >  |  Newest
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6358
Hi, My younger brother has NF. I am working with the Texas NF Foundation to raise awareness. The foundation has asked me to propose a photographic project. I'd...
sarahsudhoff
Offline
Aug 10, 2008
10:32 pm
6359
hi, 1 thing is for teaches to understand the kids they teach who have NF might have learning disabilities, the kids that have it try and try and try their...
John
bombardj1
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Aug 11, 2008
11:16 am
6360
does the foundation have any MRI's that can show how Nf affects the brain. the area of the Brain that is call the Hippacampus is the area of learning and...
John
bombardj1
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Aug 11, 2008
7:58 pm
6361
please put me on "no mail/Special notices" until further notice. With this Tropical Storm Fay headed my way, I may lose power and don't want my email to bounce...
Sherrie in Florida
sherriebaby65
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Aug 18, 2008
7:56 pm
6362
i have nf 1 and have noticed that the numbness and loss of feeling is getting worse and the feeling is starting not to return...does anyone else have this...
truconfusion
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Sep 9, 2008
9:52 pm
6363
I have it lots in my fingers if I spend lots of time on the comptuer. Other wise it doesn't happen unless I stand alot. I heard that MS runs in people that...
my4guys1diva@...
chillinfroggy4
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Sep 9, 2008
10:16 pm
6364
Hi I have numbness mainly in the 3 centre toes of my right foot, best way to describe it is as if I am wearing shoes that are too tight and my toes have been...
tracey441976
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Sep 10, 2008
7:09 am
6365
Hi, I am also having numbness in my right foot on the right side, i have had a CAT scan and a MRI and they found that there is a nuerofibroma there causing it....
Nikole Benson
eleteach03
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Sep 10, 2008
11:53 am
6366
Hi All, I am zubair and have NF1, it's quite severe as i have number of coffee marks (on right wrist and under left arm) and plenty of bumps (numbering in...
Zubair Aslam
zubair1979
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Oct 15, 2008
11:12 am
6367
hi subair i like u name well i do have the same nf1 it was dignoze at age 6 and i do have learning desability and i have my masters in special education it...
Tessy Merino
laredogirl_2...
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Oct 15, 2008
2:06 pm
6368
hi tesy, destiny, andera merino thanks for the reply and a nice inspiring story...best of luck to you and your family members your children will require...
Zubair Aslam
zubair1979
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Oct 16, 2008
5:08 am
6369
Hi Zubair, First of all there is no cure for NF, learning disabilities are very common with NF. I have then myself, you have 1 up on me I never went to...
John
bombardj1
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Oct 18, 2008
2:01 pm
6370
hi jhon, glyn and all glyn you are absolutely write that we should remember that there are people who are worse then our selves. and i used to concider my nf1...
Zubair Aslam
zubair1979
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Oct 20, 2008
4:01 am
6371
I have not heard that exercises makes tumors grow more, I just don't know. I have heard that a cholesterol called lovastatin might help a little with memory,...
John
bombardj1
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Oct 20, 2008
12:14 pm
6372
hi jhon, thanks for the reply and yes it was good...lolz... well the excersaie thing was said by millitary doctors, actually my nf1 was diagnosed when i signed...
Zubair Aslam
zubair1979
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Oct 21, 2008
4:01 am
6373
I think the key to correcting or perhaps curing this disease is to look into the endocrine system. An imbalance between the hormones secreted by the 'system'...
comdyne2002
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Oct 21, 2008
4:23 am
6374
hi comdyne (i do not know exact name), nice reply and pretty much technical...i do not understand the technical terms but can understand that you are a doctor...
Zubair Aslam
zubair1979
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Oct 21, 2008
4:46 am
6375
First, NF1 there is 1 to 3000/4000. NF2 is 1 to 40000 people. if 1 person has NF there is a 50/50 chance that the child will or will not have NF, if both...
John
bombardj1
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Oct 21, 2008
5:36 am
6376
hmmmm may be the chances of nf1 being transfered to children depends upon the severity...and i always pray that none of my children (if i have them ) have it...
Zubair Aslam
zubair1979
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Oct 21, 2008
5:40 am
6377
Dont quote me on this and I dont know how true this is but i'm sure that they have found the faulty gene that causes NF (see email below) and also im not sure ...
Steve Parker
oosteveypoo
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Oct 21, 2008
10:25 am
6378
http://www.genetics.com.au/pdf/factsheets/fs37.pdf Genetic testing for changes in the NF1 gene is not widely available and is currently expensive but can be...
Steve Parker
oosteveypoo
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Oct 21, 2008
10:38 am
6379
I do not use my name on the internet. I am not a doctor but am an amateur researcher specializing in the use of moving energy in the correction of metabolic...
comdyne2002
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Oct 21, 2008
1:44 pm
6380
NF is not really a disease of the skin NF tumors grow off nerves, they can have long roots, so lets say you have a tumor on your elbow the nerve it could be...
John
bombardj1
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Oct 21, 2008
3:23 pm
6381
well thanks again for the reply and far a amature researcher...this is a lot...frankly spekaing it seems purely professional thanks for the explanation...
Zubair Aslam
zubair1979
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Oct 22, 2008
3:07 am
6382
I would like to add another personal opinion; I believe that sun exposure on a daily basis of about 1/2 hour may be beneficial in curtailing this condition....
comdyne2002
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Oct 22, 2008
4:47 am
6383
for spelling of english, thanks to spell checker...other wise i am a worst speller and i live in Pakistan...a country in south asia and when i told the...
Zubair Aslam
zubair1979
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Oct 22, 2008
5:01 am
6384
i am going to have to leave the group. A lot is going on right now and I just can't be as committed tothe group as I like to. I know I haven't posted much, but...
Sherrie
sherriebaby65
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Oct 22, 2008
1:47 pm
6385
most of us just come and as we have time, sometimes I don't even check what has posted just pop in now and then, hope you don't leave the group by unjoining,...
John
bombardj1
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Oct 22, 2008
4:33 pm
6386
i just joined the group so im just gonna tell about myself, im 19 and was dinosged with NF1 when i was 4month old and at age 4 i become deadly ill docters...
sapre3
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Oct 23, 2008
2:08 am
6387
yes off course there is no need tp leave the group... one can carry on with reading threads... its really helpfull... so would suggest as not to leave...
Zubair Aslam
zubair1979
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Oct 23, 2008
5:04 am
Messages 6358 - 6387 of 6797   Oldest  |  < Older  |  Newer >  |  Newest
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