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    Try to get call backs

    Mr. N. I totally symphathize with you. We have learned that we have to be very aggresive with doctor's and medicial faciliies staff personnel. In the last few months, I've had a blood sample mislaid or mislhandled, had to repeat a blood sample for a parathyroid test, had trouble getting a...
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    Rilutek without neuro?

    Beth, I tried Rilutek prescribed by ALS director, but also taken with massive doses of ViT E, Melatonin and Co-enzyme Q-10. I had dirrhea big time. So I stopped everything for a while, then did Dannon Activia for two weeks. I then added 400 iu Vit E/day , for two weeks. Then I added Rilutek...
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    Many Thanks To Mr. AL Pettit, Well Done.

    I always marvel at how someone can create and maintain such a valuable website. It must take sheer genius to do so. Thanks Al, and et. al
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    Brother Frank - Gone Home

    Our prayers are offered for your brother Frank, to you for your loss, and to all to suffer from this dread disease. We also pray that as we proceed down the motor neuron disease trail, that God will watch over us, ride with us, fly with us, and bless the many caregivers who are burdened with...
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    Smothering in Sorrow

    Christy, you will find empathy, sympathy and solace on this website. Many others have gone through the trial you are going through. I am lucky. I have PMA, one of the motor neuron diseases, but it progresses much slowoer than ALS. But my prayers are offered for you. I hope this helps a...
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    Jamb

    Jamb, when I was diagnosed with PMA, my thoughts were: The news is not as bad as it could have been, but not as good as I wished it were. Of course the worst news would have been ALS. If you do a Google Search on PMA, you will get lots of information about symptoms, diagnosis, etc. No info on...
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    Anyone not have rx plan for Rilutek?

    Mine is also Medco - $50 fo 3 month supply. When I first started Rilutek, I would have given you my 3 month supply because of side affects. But after doing Dannon Activia for two weeks and continuing it, I now take Rilutek with no side affects.
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    Disappointed with our first visit to the ALS clinic

    Melanie, we also go to the UT San Antonio HSC - the ALS Clinic. All members of the staff are great and caring. Dr. Robert Hermann did the EMG and NCS on me. We had a good time talking about mutual acqauaintances. He was fun to be with. Our next visit is June 18, 2008.
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    What do you say when...

    What I say is that I have a type of motor neuron disease. If they do not know what it is, then I tell them it is a cousin to ALS. Then I say that we take life as it comes, and we will keep up with our activities (we are avid sports fans) until I drop. One nice lady, when my wife explained my...
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    anyone in texas

    Austin. I attend the ALS Clinic at UT's Health Science Center in San Antonio quarterly. Next visit June 18, 2008.
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