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Shatzie

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When I went to my new neurologist at the MDA Neuromuscular Center in OKC in June, he hinted that he thought I might have Myasthenia Gravis instead of ALS and put me on Mestinon, "Just to see what happens." I went back yesterday and he said that he loves it when doctors are wrong, especially about an ALS diagnosis. I have had no progression, in fact, my speech is almost normal and if I take the Mestinon, my energy is better than it has been in years. He told me he thinks it is MG (sero-negative), but that is still unofficial and he wants to see me again in six months. He said he is betting that I will live a long, healthy life.
 

crystalkk

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Shatzie,

I am sooooo happy for you, I am going to cry!
 

rose

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DX MND
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Shazie, that is wonderful news! I so hope that you continue to improve.

A question... did your bloodwork show MuSK positive antibodies? any lab work at all that indicated MG, or just by trial of the Mesotin?

Have a fantastic day!:)
 

Shatzie

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PALS
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02/2008
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Tulsa
All the bloodwork was negative.
 

tmasters

Senior member
Joined
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PALS
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Shatzie,

I've read ALL you blog entries and followed your story for a while.

That is FANTASTIC! So happy for you and your family.

-Tom
 

Icanmanz

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Tomball
Great news shatzie! I remember your posts. May God bless you and your children.

Irma
 

vmd

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Ditto to what the others have written!
 

Al

Moderator emeritus
Joined
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On
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Way to go. Great news.

AL.
 

BethU

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If I could spell hal-lah-lou-yuh, that's what I'd say. :)

It takes a very smart doctor to remember that 10% of MG patients have no identifyable antibodes, ever. i.e., sero-negative ! And they can be diagnosed on clinical evidence alone.

Thank you for sharing the results! (And I love that Mestinon energy !) It would be wonderful if the Mestinon will handle all the symptoms and you won't even need more treatment. Complete remission is not at all uncommon.

Continued good luck!
 

puzzled36

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Shatzie -

Sooo happy for you! I have always followed you because you sound a lot like me. CONGRATULATIONS! I hope someone gives me similiar news.

Keep us posted,

Gina
 

sdsyd

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Shatzie!

GOOSEBUMPS! That is awesome! Whatcha gonna do to celebrate?

LOve,
Cindy
 

Thumbs Up

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That is great news!
 

lydia

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yahoo!

I have wondered how you were doing, how absolutely wonderful! :lol:

Lydia
diagnosed BFS, lowB12
 
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