hrmph....

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sdsyd

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Well, the nurse called and said the results for both MG panels are negative and that she faxed the reports to my neuro and Dr. wantshim to do a full EMG and have a look at the atrophy in my right thumb....
When she told me they were negative I said " Ah, shit!" and she said "I know hon, I know"

So now I continue to wait on the cancellation list to get back in to see neuro. Usually I am upbeat, but I was really hoping the MG antibodies would be there! Thank you all for allowing me a place to come.

Love,
Cindy
 

BethU

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Cindy, I'm so sorry the tests were negative. Damn!

But I know I have read somewhere (and I can't find it now, unfortunately) that 7% of all MG cases are diagnosed on the basis of clinical symptoms only. In other words, they have not yet identified all the antibodies that might cause this disease. The MuSK test only id's about 3% of MG cases. (I may be wrong on the figure, but I know MuSK antibodies account for a very small percentage of cases.)

When I was (mis)diagnosed with MG, it was on the basis of clinical symptoms only. When you see your neuro, ask about Mestinon. If that helps you, it might be a clue. (Although the side effects are unpleasant ... for me it was REALLY heavy saliva and twitching all over my body; other people have major digestive problems with it.)

I'm not trying to create false hope, and it would be so lovely if the tests had been positive, but I think there is still some room for an open mind. The odds are not as good as before, but if your neuro does not think it's MG, I hope he/she will explain fully what clinical observations point away from MG.

Hang in there,
BethU
 

awieleba

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Oh Cindy

I am sorry! I asked my neuro about MG, she said it was about 10% that dont show in blood. You never know. It is such a down feeling when things come back normal, when you want some other explanation.
give them kids an extra big hug and kiss tonight, shoot--get cozy and snuggle with them all night!
 

sdsyd

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I need to do some research. I had two very seperate studies for MG. One was the Anti-Musk and the other was an MG Panel. Thanks guys for , well..you know um everything>?
 

brendapals

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Cindy,
bless your heart, please, please don't give up! Beth is right, if it truly is MG, then your doctor should give you the Mestinon trial. From everything I have read, it works immediately if it is MG.
Don't stay up too late, April is absolutely right-hug the kids and get some rest.
We'll all be praying for you,
Keep the faith,
brenda
 
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