Found out from a NF Dr I am unique ????

Living with NF can be challenging and many of our BB users have offered their support, guidance and advice on various ways to cope with the emotional, spiritual and physical burdens that NF can sometimes cause.

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Found out from a NF Dr I am unique ????

Postby Heidi » Wed Apr 29, 2009 1:04 pm

You all will LOL at this first I read the average age a person with NF lives is age 54.
Yikes I am going on 53. Said FRoberta Messner PhD RN in Huntington west Va on a web page if yuo gogle it yuo can find it too. Then on top of that a NF researcher Dr Peggy wallace i am going to her talkk on NF down in gainsville,FL, ( GO GATORS ) on the 16th from 9-2 then go to a talk on fibromyalgia from 2-4. well seems dr. Wallace works with dr.Staud the fibromyalgia researcher in Gainsville too. She relied back they havenot sen many patients with NF #1, a plexiform on right upper thigh area, Fibromyalghia (FIBRO),Myofascial pain, (MPS)Multile chemical senstivites (MCS) all together so i am unique.I get tot alk to both Dr's after there talk at the UF food court. So seems something wil come good uot oft his.

Theyare loking into gene therapy for NF #1 nad also something to deplete certain Genes to shrink or do away with certain plexiforms.That is huge.
I also found uot Ihave severe osteoporsis of hips moderate of spine so if i fall i cuold break a hip. Miss Freddie I am now using a cane tooand alos havea 4 pronged one inhte huose. Might ask for a RX for a walker with a seat to sit on too donot need a broken hip. but just had to smile being told I am uniqu with my NF,Fibro,MPS,MCS makes me smile. wish BigBrother AKA Ghostwriter was stillaorund tohear thishe would laugh nad make a joke with me on it.Imisss his books, e-mails and his care packages too but knowing he is free from his NF walking the sgtrets of Gold withhis Jesus and loking down on us makes me smile to but justhad to share this all with yuo.I donot come here that often to ost but i do red nad pray for each of yuo too. right now the fibro,MPS,NF pain is ouchie.I canot do benydryl that wires me and on Neutropin for my fibro 300mg 2 pills 3 times a day which i am cutign abck on no Lyrica due tome being on a Ace inhibitor and no Savella due to myheart trouble but i get by. so just remember me in yur rpayer onMay 16th long day nad sunday wilbe resting and catching up wiotht hings too for Gainsville si a good 2 huor drive long way or short way is 1 1/2 then lectures all day long. pillow extra pain pills, protein bars, water to drink etc and lotionnad some smell good lavedar hand lotionand also camera with extra batteries nad big SD card too for pictures.I domiss hering from marcy,eesnow,Mark, miss fredie nad few others too. so e-mail me ok gys and glas seem if i doot post no e-mails and thathurts too.I am no longer a moderator for fibro i stpped own tomuch stressnad let others do it too. heidi
He is your friend, your partner, your defender,
> your dog. You are his life, his love, his leader.
> He will be yours, faithful and true, to the last
> beat of his heart. You owe it to him to be
> worthy of such devotion"
>
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Re: Found out from a NF Dr I am unique ????

Postby Tygermouse » Fri May 01, 2009 12:43 pm

I only have 20 years left!!! OMG what will I do.

:P PPPFFFFTTTT
Ich bin klein mein Hertz ist rein sol nehmand drin wohnen als Jesus alein
I am small my heart is pure no one should live there but Jesus alone
Crazy is one more cat than you already have.
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Re: Found out from a NF Dr I am unique ????

Postby nfgirl » Fri May 15, 2009 6:46 pm

Well then my dad should have been dead for about 9 years ago..........LOL
And I will Die in about 10 years...........
HMMMMMMMMM
What shall I do?

I want to live till I am 75 at least................
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Re: Found out from a NF Dr I am unique ????

Postby Kitty Lover » Fri May 15, 2009 7:23 pm

My grandmother lived until she was 80.
My dad just turned 77.
I'll be 50 next year.

Yup.... we're unique too! :D
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Re: Found out from a NF Dr I am unique ????

Postby Mark H » Sat May 30, 2009 11:25 am

Darn.
I've been on borrowed time for close to 2 years. Where's my cane, dangnabit? And my blanket. It's too cold in here. And you kids get out of my yard.
There, now I fel better. :D :mrgreen:
Mark
Si Vis Pacem Parabellum
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Re: Found out from a NF Dr I am unique ????

Postby Tygermouse » Tue Jun 02, 2009 10:56 am

Mark H wrote:Darn.
I've been on borrowed time for close to 2 years. Where's my cane, dangnabit? And my blanket. It's too cold in here. And you kids get out of my yard.
There, now I fel better. :D :mrgreen:
Mark


LOL! Huh what's that? Speak up I can't hear you, why is the TV so loud?! Where are my glasses?
Ich bin klein mein Hertz ist rein sol nehmand drin wohnen als Jesus alein
I am small my heart is pure no one should live there but Jesus alone
Crazy is one more cat than you already have.
Image
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Tygermouse
 
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Location: B.C. Canada

Re: Found out from a NF Dr I am unique ????

Postby Buck_Williams » Tue Nov 03, 2009 1:00 pm

I still have about a quarter of a century on all you old-codgers. :lol:
"I'm not ashamed to speak the name of Jesus Christ"
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Re: Found out from a NF Dr I am unique ????

Postby israel » Mon Nov 09, 2009 6:57 am

all of us are going to dye in 2012,
so it dosent realy matter to me if avrege the life is 54...
(.

that is so funny my doctor whold kill me if she new i read what your doctors had told you....
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Re: Found out from a NF Dr I am unique ????

Postby Buck_Williams » Mon Nov 09, 2009 8:22 am

all of us are going to dye in 2012.


According to the Mayan calendar. But, since when can we accurately predict the future.

I only know 4 certainties:

1. Jesus is who he said he was.
2. Jesus is coming back.
3. We don't know when he is coming back.
4. We need to be ready for his return.

Okay, I'm off my soapbox now.
"I'm not ashamed to speak the name of Jesus Christ"
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Re: Found out from a NF Dr I am unique ????

Postby israel » Tue Nov 10, 2009 6:41 am

i was joking... i dont realy think we are all going to dye in 2012. (if we are it not so bad beuse evryone goes together, so not dying actully missing somthing...)
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