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Reply | Forward Message #4192 of 6809 |
Re: [Neurofibromatosis] Re: Symptoms


Isugarrita1 <no_reply@yahoogroups.com> wrote: I HAVE HAD SOME REMOVE ONLY TO
FIND THEY COME BACK. THAT IS WHAT I GET THE MOST UP SET ABOUT I HAVE NOT HAD
THEM LAZERED TREATMENT I THINK THAT COST ALOT OF MONEY I AM ON MEDICARE. WOULD
WOULD NOT BE COVERED. I DO NOT HAVE ANY KIDS NOR AM I MARRIED.I AM ALSO TALL BUT
THAT HAS NOTHING TO DO WITH NF. AS MY FAMILY IS TALL I DO READ WHERE IF YOU HAVE
NF YOU ARE SHORT I SAY NF COME IN ALL SHAPE SIZES RACES.Lould be inrerested in
more feedback on this subject from others.
I also am aware that hormonal changes can cause growth spurts as it
did me during my pregnancies and I have heard birth control pills
could also....how about the men? My father who also has NF never had
any until he was in his 20's. After that (most are on his back) he
never got many more bumps. I never had more CAF spots appear but I
have noticed more bumps from time to time. I have them lasered and
this helps keep up. I do worry about menopause and have thought that
maybe docs could do something to prevent this. Also, I am positive
that stressful times can cause my bumps to stick out more....but then
they seem to go back down or even away. Any other comments on growth
spurts or the amount of fibromas or changes?


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Sun Feb 2, 2003 10:35 pm

cam11956
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Message #4192 of 6809 |
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Hello, Everyone I have been under quite a lot of stress recently and both my CALs and the lumps and bumps seem to increasing. Does anyone know if there is a...
wendysguk <wsg@...>
wendysguk
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Feb 2, 2003
8:18 pm

Wendy, It may or may not be stress related. In the natural progression of NF you eill get more and more Fibromas as you get older. I have many more now than...
ca-unicorn
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Feb 2, 2003
8:49 pm

HI WENDY FUNNY YOU SHOULD SAY THAT BECAUSE MY BUMPS ARE ALSO COMING OUT MORE I THINK STRESS HAS ALOT TO DO WITH IT UNSURE IF THE DR'S WOULD AGREE WITH ME....
CAMERON SHEELEIGH
cam11956
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Feb 2, 2003
9:48 pm

I would be inrerested in more feedback on this subject from others. I also am aware that hormonal changes can cause growth spurts as it did me during my...
sugarrita1
Offline
Feb 2, 2003
10:16 pm

Isugarrita1 <no_reply@yahoogroups.com> wrote: I HAVE HAD SOME REMOVE ONLY TO FIND THEY COME BACK. THAT IS WHAT I GET THE MOST UP SET ABOUT I HAVE NOT HAD THEM...
CAMERON SHEELEIGH
cam11956
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Feb 2, 2003
10:35 pm

HIi there, Since your NF was a spontaneous mutation your children have a 50% chance of getting it. If they are lucky and do not get it ........they will not...
Genevieve Seymour
cleo5899
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Feb 5, 2003
3:17 pm

Wendy, I too have noticed more bumps and such when I am really stressed out. Also when I have a glass of wine it makes my bumps seem more evident. (does this...
Juliana
jules98422
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Feb 2, 2003
11:49 pm

About the bumps I heard that Vitamin E helps slow them down, and well alittle Vitamin E every day cant hurt you can it? I know that its expensive I heard from...
Karate Dove
karatedove
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Feb 3, 2003
2:20 pm

Sherri, I have also heard about vitamin E slowing growth of tumors but do not know of anyone who could testify to that. Myself, during both my pregnancies,...
sugarrita1
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Feb 3, 2003
5:54 pm

I don't know about V-E slowing the growth of NF down any I've been taking V-E every day for about 4 years, cant really tell you if it has helped or not. I've...
sweetnuttin00
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Feb 3, 2003
6:40 pm

Hi Rita I have been led to believe that you can't be a silent "carrier" of NF. Drs have told me that you must have some physical sign of the disorder i.e. CAL...
kazza34au
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Feb 4, 2003
10:51 pm

You are correct Karen, You cannot be a "carrier" of NF. Since it is a dominant gene if you have the gene you will have some sign of it....however mild or ...
Genevieve Seymour <cl...
cleo5899
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Feb 4, 2003
11:06 pm

I have NF and nither one of my parent have it. Mine was do to a spontanious mutation too. Most of the cafe spots are usually under the arm pits and around the...
Karate Dove
karatedove
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Feb 5, 2003
1:30 pm

Hi again, My son is aged 9 & has the CAL spots mainly on his left side of his body and a large number on his left thigh. He also has lisch nodules in both...
kazza34au
Offline
Feb 6, 2003
9:55 am

I HAVE GOTTEN FAR WORSE AS I GOT OLDER. MY FACE IS BREAKING OUT I AM VERY UP SET ABOUT THIS. SOME TIME I DO PLAN TO HAVE THEM REMOVED WHEN I FIND A DOCTOR THAT...
CAMERON SHEELEIGH
cam11956
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Feb 4, 2003
9:02 pm

Please bear with me as I am totally sick right now.. When I am stressed, ican feel the bumps. especillly on my back. It feeels as if someone were pinching me...
cardshark_kev
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Feb 4, 2003
7:17 am

Hi All What I found when I was a little bit stressed, under pressure and / or worried, was that the lump above my left eye (this is where my nf has affected me...
sparkiesean
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Feb 4, 2003
8:52 am

Dear everybody Thanks for all your helpful comments to my query. I will try the Vitamin E. I certainly agree there is some sort of hormonal connection. I ...
wendysguk <wsg@...>
wendysguk
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Feb 3, 2003
8:14 pm
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