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Old 10-19-2008, 07:41 PM #10 (permalink)
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Join Date: 2008
City: Anytown
State: Maryland
Country: US
Diagnosed: 7/2008
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 2,892
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rose rose is offline
Extremely Helpful Member
rose's Avatar
Join Date: 2008
City: Anytown
State: Maryland
Country: US
Diagnosed: 7/2008
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 2,892
rose is on a very distinguished roadrose is on a very distinguished road
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Tanya, I read your original question to mean that you're concerned that your sister in law would go off of the Rilutek and therefore not qualify to be in any upcoming trials, and additionally that the suggestion the doctors could be wrong were coming from acquaintances that did not have a medical background.

I still believe that if she was diagnosed at a clinic that specializes in ALS, that they would not give such opinion unless she'd met the criteria (that is very stringent) for MND.

If she didn't go to an ALS clinic, then their opinion might have been hasty.

This isn't to say she shouldn't have another opinion. And, of course no one wants this awful disease, but please encourage her to stay on the Rilutek. This is the very reason I'm taking it ~ to qualify for future trials and studies. Its much better for her to go with what was given her, than to throw herself back into Limboland.

If her next doctor has doubts about the diagnosis given, and can find that she also could have another condition, then that will be wonderful news. The roller-coaster ride is a hard one though.

the best to you and your family.
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