Recent content by samy

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    Myozyme

    Hi everybody, I was watching our local news tonight and there was a story about Pompe disease which is a type of neurological disease, they started to use a drug called Myozyme which has just gotten FDA approval. The drug company has also mentioned they are going to do trials with this drug...
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    Gallstones & ALS?

    Good Morning all. I'm just wondering if anyone has had an experience of GALLSTONES in the later stages of ALS. My father-in-law has bulbar ALS (we think) & has recently been hospitalized due to fluid build up. He has limited mobility and can drink soups only. Has anyone had a similar...
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    riluzole and lithium

    Hi everybody, My dad was admitted last Sunday into the hospital, he was having a very difficult time breathing, basically there was so much swelling from his lower body it was going up into his lungs. Luckily we were not too late and the doctors put him on diuretics, the swelling has now been...
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    Far Infrared Radiation (5µm to 20µm wavelength)

    Hi Al, i was wondering if your neuro ever got back to you about this?
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    Far Infrared Radiation (5µm to 20µm wavelength)

    Hi Everybody, I was wondering if anyone has heard about this possible treatment "Far Infrared Radiation (5µm to 20µm wavelength)" for ALS. I think this is the link to read more about it http://clinicaltrials.gov/ct2/results?term=Amyotrophic+Lateral+Sclerosis&recr=Open&cntry1=NA%3ACA I had...
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    Swollen Feet

    Hi everybody, I was wondering if anybody ever had swollen feet, my father who was diagnosed last year is now not able to walk very far (15 - 20 steps with a walker), but in the last week his feet have swollen a lot, our neurologist suggested a tensor sock for his feet, I was just wondering if...
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    Dad having problems breathing

    Thanks Rob, I'll let my Dad know tonight when I see him, is your BiPAP a mask or does it attach to your nose? Thanks Doug
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    Dad having problems breathing

    I was wondering if anyone can suggest what to do, my father is having a hard time breathing when he goes to bed, and last night he couldn't sleep at all. Thanks
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    IVIG - how long to show results?

    Hi Al, Thanks for the quick response, are you now taking riluzole? The doctor told us that my father would be taking this in the new year depending if the treatment worked. By the way I'm not sure who is in charge of this web site but it is wonderful!
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    IVIG - how long to show results?

    Hi I’m a new person to this forum, my father was diagnosed (95% sure) with ALS 5 months ago, although the EMG still hasn’t given 100% proof of this, the doctor still believes it is. He has bulbar speech but that is it; he is not weak in any of the upper or lower parts of his body. My father...
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