Guest guest Posted May 11, 1998 Report Share Posted May 11, 1998 I am also interested in the motility med. S. Re: Digest Number 88 > > >Lori wrote: >>Anyone who is friends with Anne and , please make sure they get >>these links. I think this info may pertains to both of them. I >>haven't seen them on the lists so I am not sure they are getting this >>info. > > >Lori- > >Thanks - I have not posted alot lately due to craziness here, but I have >been getting the info and I appreciate it. I am going at the MNGIE thing >with caution, as so many disorders have GI involvement and so many present >so differently. Good luck to you in your quest!! > >I am very interested in the new motility med that you have mentioned and the >upcoming trials. Could you please send me more info? I would like to >discuss it with our GI doc. > >Thanks - hope this finds you and Alycia doing well. > > > > >------------------------------------------------------------------------ >Give back to your community through " Grow to Give. " >http://www.ONElist.com >See homepage for details. >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 1999 Report Share Posted May 11, 1999 Hi and , As soon as I know more about the med, I will let you know. The doctor didn't tell me the name of it yet and we haven't entered the trial as of yet. As much as I do know is that it supposedly helps those who were unresponsive to all the other motility meds including propulcid (cisapride). Since Alycia has been unresponsive to these, she is the perfect candidate for the trials. I think the med is Octreotide but don't quote me. The reason I say this is that he showed me a research article that his collegue was working on and it was about using Octreotide for motility. I will keep you all posted. Lori wrote: > > > I am also interested in the motility med. S. > > Re: Digest Number 88 > > > > > > >Lori wrote: > >>Anyone who is friends with Anne and , please make sure they get > >>these links. I think this info may pertains to both of them. I > >>haven't seen them on the lists so I am not sure they are getting this > >>info. > > > > > >Lori- > > > >Thanks - I have not posted alot lately due to craziness here, but I have > >been getting the info and I appreciate it. I am going at the MNGIE thing > >with caution, as so many disorders have GI involvement and so many present > >so differently. Good luck to you in your quest!! > > > >I am very interested in the new motility med that you have mentioned and > the > >upcoming trials. Could you please send me more info? I would like to > >discuss it with our GI doc. > > > >Thanks - hope this finds you and Alycia doing well. > > > > > > > > > >------------------------------------------------------------------------ > >Give back to your community through " Grow to Give. " > >http://www.ONElist.com > >See homepage for details. > >------------------------------------------------------------------------ > >Brought to you by www.imdn.org - an on-line support group for those > affected by mitochondrial disease. > > > > ------------------------------------------------------------------------ > Looking to expand your world? > http://www.onelist.com > ONElist has over 145,000 email communities from which to chose! > ------------------------------------------------------------------------ > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
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