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Re: [IP] Re: gastroporesis/ neuropathy

It occurs to me that you might want to know that in the medical literature at Kaiser
in Oakland, Propulsid is only recommended for 6 months to a year.  Long term its
effectiveness declines and it does have some side effects.  Many doctors are
prescribing it long term anyway and when I asked the endocrinologist there about it,
he said it probably doesn't hurt to take it longer than a year and that the best
course of treatment would really be to take it for 2-6 week periods when the
gastroparesis got bad. Then I asked why they didn't prescribe it that way and he
said because most patients weren't reliable enough to handle it and because the
logistics of seeing them that often and represcribing medication were too
complicated.  It definately helps and it definately stops helping as much over time.

VERUHL wrote:

> email @ redacted wrote:
> >
> > Don't know if this will be any help to you, but my doctor decided I had
> > gastroporesis about 10 years ago with no testing.   Besides odd bg rises in
> > the night, I sometimes had the experience of having reactions symptoms while
> > still eating or soon after eating.  I had a lot of nausea, particularly in the
> > morning, and also morning diarrhea.  From an article in a JDF publication I
> > learned the technique of sucking on something for the delayed bg action (I
> > think the suggestion was honey, but I usually used hard candy).  The idea is
> > that the amylase in the saliva can start things out, and that usually seemed
> > enough to get things going.  But the nausea and diarrhea wore me down, and the
> > doctor prescribed reglan, which did seem to help it.  But after a few years I
> > tried to get along without it (Richard Bernstein claims good control can cure
> > it, and I was having good A1c's even with all my fluctuating blood sugars>).
> > I don't think I have taken it in about 4 years, although I have recently been
> > having lots and lots of nausea and both the doctor who prescribed the reglan
> > (who is a family practice doctor) and the two diabetologists I have seen this
> > year have wanted me to go back on it, or if not that, propulsid.  When I
> > mentioned to one (the one I like) that I was never tested, she led me to
> > believe the tests weren't that good anyway -- and I certainly was not anxious
> > to go through it if it was not necessary.  (I did have a sonogram to rule out
> > some other possible causes).
> >
> > I just went on the pump last week, and I guess I am hoping that things will be
> > sufficiently better that it will go away again.  Hope springs eternal.
> >
> > Good luck.
> >
> > Linda Zottoli
> > diagnosed at age 8 in 1955
> Greetings-
> Thanks for responding Linda.  I have already cancelled this test once
> but my endo seems to feel it's necessary prior to trying me on Propulsid
> (or whatever it is - he keeps talking a out).  I have all those symptoms
> too - unexplained nightime highs, diarhea, nausea- and I'm pretty worn
> down too.  All this has happened since my recent surgery in July and I
> was hoping (?) my problems were related to that.  My most recent Ha1c
> was 8.5 - the worst I've had since starting on the pump a year ago.  For
> me the pump hasn't been 'a piece of cake' (sugar free or otherwise).  I
> have had problems - not that I want to go back to MDI - but the thought
> has crossed my mind.  I don't think this new endo will give me a
> prescription for gastroparesis without the test.  Guess it can't hurt to
> ask.
> Thanks again.
> Dianne
> Neuropathy-
> Sara, I do think that Neuropathy does feel like fire in the feet, but
> also know that long days (or nights) tripping the light fantastic (who
> came up with that one?) or it's modern day equivalent (aerobics) can
> cause a similar effect.  Similar but not the same.  My neuropathy hurts-
> it's hot too but it feels more like someone is putting out their
> cigarette on my foot- stabbing it out in fact - keeps you awake.  I
> daresay your toosies are just plum tuckered out and all the little nerve
> endings may be shocked to boot!    Easy there. Save your energy for
> joining the rest of us 'pushy broads' who are going to tackle Diabetes
> Education in America.
> Dianne
> Rodney-
> Every time I think my diabetes is a real pain I hear from someone like
> you who makes my issues seem so small.  Best of luck.  Hang in there and
> I'll keep you in my prayers.  Thanks for the info.
> Dianne
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