Recent content by Shankopotomas

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    Thank you Deb and Ladyinn - my apologies for taking so long to respond - having my little girl...

    Thank you Deb and Ladyinn - my apologies for taking so long to respond - having my little girl outside of her mom has made life much more hectic! We did bank her cord blood and cord tissue, and the doctor said he was able to get a significant amount. With the developments going on down at Emory...
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    On the REAL Dex Drug Trial as of Today:

    Hi everyone - it's been a while since I've posted, but I'm in the same boat as the pals/caregivers on this thread, so I figured I'd give an update. I started the Dex trial at Columbia in NYC last August, and began getting the "real thing" in October. I have a feeling that I've been on the real...
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    Looking for some advice

    Thanks so much everyone. It really is such a bizarre situation - we had been trying for over a year, finally got the good news, and then got my bad news. I've accepted that I've got this disease and that things are going to change, but as of now things really haven't. The day after my diagnosis...
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    Hi - I noticed your photos from the walk across the hudson - are you local to NY/CT? I live in...

    Hi - I noticed your photos from the walk across the hudson - are you local to NY/CT? I live in Stamford. I haven't been really involved with events since my diagnosis, but definitely want to. Any suggestions?
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    Looking for some advice

    Just a quick question for you all - I was diagnosed in June, and obviously it's been hard on everyone close to me. My question (and I guess it's mainly directly to the women out there, though anyone fee free to chime in) is what I can do to try and ease the stress/burden for my wife, who's 7...
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    Phase III: Dexpramipexole

    Hi everyone - I've been absent for a bit but I wanted to check in with a quick update. I'm about three and a half months into the trial now, and I honestly have no idea if I'm on the drug or the placebo. I got into the trial about 2 months after I was diagnosed, and with a slow progression to...
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    Phase III: Dexpramipexole

    One of the questions asked at all the dex visits had been if I've had an increase in saliva production (didn't at first, but over the past three weeks I have). Is this a drug side effect? Has anyone else experienced this?
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    I wanted to share some good news

    GP - it's great to hear how positive you're staying through all this. The disease can definitely take a toll on the patient and on the family, and it sounds like you guys are making the most of a situation none of us deserve to be in. I'm focusing on the positive too - I'm in the dex trial, the...
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    Phase III: Dexpramipexole

    I've been in the trial for a month now and I'm finding that it's not worth the aggravation trying to figure out if it's the real thing or the placebo... My progression has been really slow to begin with, so I really can't tell if it's doing anything anyway. The one thing that I've noticed is...
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    Phase III: Dexpramipexole

    Fingers crossed for you, KissJ! I'm going in for my 2 week checkup tomorrow, and all I've noticed so far are the headaches (I NEVER got headaches before) and sort of lump/frog in my throat. I'm sleeping fine and do have some joint soreness, but nothing really notable.
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    Research news about the cause of ALS

    This is big, big news... I'm going tomorrow for my 2 week Dex trial visit so I'll ask the docs at Columbia to break it down and tell me the real significance of it... now that they can pin point ehat's happening to us hopefully they can find a way to reverse it... wishful thinking I know, but...
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    Anyone on the Dexpramipexole trial?

    I've been on the dex trial since last thursday as well. I'm not sure if it's related or a side efffect, but I sort of like there's some phlegm in the back of my throat that just sits there... I don't think I have a cold or anything, but who knows.
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    Exercise and ALS

    Hi all - I have a question. I'm in the very early stages of this disease, and my life prior to this consisted of weightlifting, running, etc. In fact it, i think it was why i was able to catch it so early - I still have no strength loss in my day to day activities but when lifting heavy weights...
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    Newly diagnosed... staying optomistic

    Thank you everyone... I'm a little under a ween into the dex trial now, so I'm not sure if I got the real thing or not. Does anyone know of any side effects associated with it that i can be on the lookout for? Or any indication that its the actual drug? I know the side effects are supposed ot be...
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    Phase III: Dexpramipexole

    Do you guys know of any other indications that you're on dex and not the placebo? I've been taking it for about a week now and I've noticed some congestion but nothing else. I know it's supposed ot be blind trial, but of course i want to know if I'm getting the real thing.
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