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Dbld78

neurofibromatosis

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Originally Posted by amandalovesryan View Post
Good luck, like I said, I will pray for you and your family! So for you guys and your extended family to get tested, do you also need MRI's? One of the interns that I used to work with actually went to Jeff to be a neurologist. Is that where everyone will go or will you go to the burbs?



WHere does your sis live?
she's right in upper pottsgrove!

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Originally Posted by Dbld78 View Post
THANK YOU ALL! for all your well wishes....it's so nice of you all! and thanks for the additional information...

i will have to have an mri as well.

my mom will be see a nuerologist at penn as well at the end of the month, and we'll have see what he says too. but so far it seems pretty positive considering her age and this being just diagnosed the outcome looks good!

but again thanks for all your thoughts and prayers you guys are very sweet and supportive. i just needed to vent a little and thought i'd put it out there.....

thanks!smile03.gif
I'm so sorry that you're dealing with this. I actually work in the Neurology Dept. at Penn. Let me know if you need anything!

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Originally Posted by Lizz View Post
I'm so sorry that you're dealing with this. I actually work in the Neurology Dept. at Penn. Let me know if you need anything!
oh wow! yeah she has an appointment with dr. o'malley on the 26th. thank you so much for you offer of help! i really appreicate it!smile03.gif

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Originally Posted by Dbld78 View Post
oh wow! yeah she has an appointment with dr. o'malley on the 26th. thank you so much for you offer of help! i really appreicate it!smile03.gif
Definitely, just let me know if you ever need anything.

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I just wanted to say that I will keep you mom in my prayers. I know just how hard this must be for you. My mom had to have brain surgery 2 years ago to remove a tumor (non cancerous).

 

I'll pray for her and your family.

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Originally Posted by FutureMrsB View Post
I just wanted to say that I will keep you mom in my prayers. I know just how hard this must be for you. My mom had to have brain surgery 2 years ago to remove a tumor (non cancerous).

I'll pray for her and your family.
really...how did it work out? i hope she's ok? so far they don't want to opperate just radiate.

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Originally Posted by Dbld78 View Post
really...how did it work out? i hope she's ok? so far they don't want to opperate just radiate.
Everything went fine, thank god. She's such a trooper and just a fighter in general. The worst part about it for her was that they had to shave her head. (So she says) :-)

Obviously, it was a lot scarier for me and my sisters, but God truly does work miracles. So keep praying!!

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UPDATE!

 

So my mom saw Dr. O'Malley at Penn on tuesday, she feels more comfortable now with her diagnosis and felt more comfortable with him. She felt like he was more knowledgeable about the disease and she found that more comforting. They have given her a diagnosis of NF2 and believe it might even be Schwannomatosis, which is even more rare!

 

I've decided to go on a joint appointment with my mom for our genetic counselling, it'll be a family affair!

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Originally Posted by Dbld78 View Post
UPDATE!

So my mom saw Dr. O'Malley at Penn on tuesday, she feels more comfortable now with her diagnosis and felt more comfortable with him. She felt like he was more knowledgeable about the disease and she found that more comforting. They have given her a diagnosis of NF2 and believe it might even be Schwannomatosis, which is even more rare!

I've decided to go on a joint appointment with my mom for our genetic counselling, it'll be a family affair!

That sounds really good. I'm glad she found a doctor that she likes, that's really important. Keep us updated!

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