Dana,

The only treatments you have had are steroids and using the netti pot??

Harry

--- In dysosmia@yahoogroups.com, DANNA FRANKS <dannafranks@...> wrote:
>
>
> Hello everyone...
>
> It has been awhile since I posted anything. This site gave me so much
> information and hope, after I lost my sense of smell. It let me know - ³Iım
> not crazy!².
>
> Within the past 3-4 months I have regained a portion of my sense of smell.
> Itıs certainly not the Keen Sense of Smell that I once had...but itıs also
> not the horrible, distorted smells that I had lived with for the past year.
>
> More and more things are beginning the smell ³right². There are still a few
> things that ARENıT good...coffee (this is the worst, as I loved the smell of
> coffee and now this ³odor² that I get with it is the same odor of skunks, my
> dogıs gas, etc), onions ­ which is something else that I loved and now I
> have a difficult time smelling or eating them, eggs, some perfumes and
> lotions ­ mainly ³berry² scented fragrances.
>
> But, for the most part ­ I can live with these few things. I hope that my
> sense of smell will continue improving over the next year. I need to use my
> netti-pot more often and I do believe it will. I may request another dose
> of steroids to get a Kick-start and see what happens.
>
> But...compared to what I was going thru a year ago...Iım ecstatic!
>
> Thanks all!
>
> Danna
>
> On 4/20/09 8:33 AM, "harryony1" <harryony1@...> wrote:
>
> >
> >
> >
> >
> >
> > I was disappointed in the lack of postings.. Please don't give up people!!!
> > If any of you have regained any part of your sense, please share it with us
so
> > we may have some hope.
> >
> > thanks
> > Harry
> >
> > --- In dysosmia@yahoogroups.com <mailto:dysosmia%40yahoogroups.com> , Mick
> > O'Hare <Mick.O'Hare@> wrote:
> >> >
> >> > Hi Harry
> >> >
> >> > Nice to have you back. Stick with the treatment!
> >> >
> >> > Mick
> >> >
> >> >
> >> > On 15/04/2009 01:16, "harryony1" <harryony1@> wrote:
> >> >
> >>> > >
> >>> > >
> >>> > >
> >>> > >
> >>> > >
> >>> > >
> >>> > > Well I didn't use the beta for the second post but it took and now
that
> >>> > > is how I am getting it done.
> >>> > >
> >>> > > continuation: Nothing special , I am doing ok mentally and have
great
> >>> > > faith in Dr Henkins theropy!! Several hundred words less :)
> >>> > > .....................
> >>> > > --- In dysosmia@yahoogroups.com <mailto:dysosmia%40yahoogroups.com>
> >>> <mailto:dysosmia%40yahoogroups.com> ,
> >>> > > "harryony1" <harryony1@> wrote:
> >>>>> > >> >
> >>>>> > >> > lost the continuation too !! ,,,, nothing great I am doing ok and
> have
> >>> > > faith in the theorpy.
> >>>>> > >> >
> >>>>> > >> > Harry
> >>>>> > >> >
> >>>>> > >> > --- In dysosmia@yahoogroups.com
<mailto:dysosmia%40yahoogroups.com>
> >>>>> <mailto:dysosmia%40yahoogroups.com> ,
> >>>> > >> "harryony1" harryony1@ wrote:
> >>>>>>> > >>> > >
> >>>>>>> > >>> > > Well, here it is and I did just get back from a 23 state
tour
> of the
> >>> > > USA with 8750 miles of driving and 2075 nautical miles (Caribbean
> >>> > > Cruise) on the great Atlantic.
> >>>>>>> > >>> > > We left the great Northeast USA on Feb 17 and visited Dr.
> Harkin on
> >>> > > the 19th, a scheduled appointment. I took my daily report sheets which
> >>> > > indicated how I was smell/tasting for the previous several months from
> >>> > > my first meeting, percentage wise to what I thought. Update:
apparentyly
> >>> > > I was not at 0 when first diagnosed, as I called it a sensation. These
> >>> > > sensations are taste/smell but unable to identify what I was eating.
The
> >>> > > sensations were still there, however, now I have these distortions
that
> >>> > > made bad smelly things the object of a dinner craving???? WOW I think
I
> >>> > > blew the ole doc away when I suggested that a flavor that was
"something
> >>> > > really bad" would have been a favorable meal. :) Well it certainly
> >>> > > answered a few questions for me.
> >>>>>>> > >>> > >
> >>>>>>> > >>> > > to be continued!! ( I have posted prior to this and lost
> lenghty
> >>> > > post)
> >>>>>>> > >>> > >
> >>>>>>> > >>> > > --- In dysosmia@yahoogroups.com
> >>>>>>> <mailto:dysosmia%40yahoogroups.com>
<mailto:dysosmia%40yahoogroups.com>
> ,
> >>>>> > >>> "O'Hare, Mick (RBI-UK)"
> >>> > > <Mick.O'Hare@> wrote:
> >>>>>>>>> > >>>> > > >
> >>>>>>>>> > >>>> > > > Back last week Harry. Hopefully you've missed the worst
> of the
> >>> > > winter.
> >>>>>>>>> > >>>> > > >
> >>>>>>>>> > >>>> > > > M
> >>>>>>>>> > >>>> > > >
> >>>>>>>>>>> > >>>>> > > > > ----------
> >>>>>>>>>>> > >>>>> > > > > From: dysosmia@yahoogroups.com
> >>>>>>>>>>> <mailto:dysosmia%40yahoogroups.com>
> >>>>>>>>>>> <mailto:dysosmia%40yahoogroups.com>
> >>>>>>> > >>>>> on behalf of Harry O
> >>>>>>>>>>> > >>>>> > > > > Reply To: dysosmia@yahoogroups.com
> >>>>>>>>>>> <mailto:dysosmia%40yahoogroups.com>
> >>>>>>> > >>>>> <mailto:dysosmia%40yahoogroups.com>
> >>>>>>>>>>> > >>>>> > > > > Sent: Monday, February 16, 2009 2:43 PM
> >>>>>>>>>>> > >>>>> > > > > To: dysosmia@yahoogroups.com
> >>>>>>>>>>> <mailto:dysosmia%40yahoogroups.com>
> >>>>>>>>>>> <mailto:dysosmia%40yahoogroups.com>
> >>>>>>>>>>> > >>>>> > > > > Subject: RE: [dysosmia] Re: Also new
> >>>>>>>>>>> > >>>>> > > > >
> >>>>>>>>>>> > >>>>> > > > > Sure thing Mick. Arn't you there now for business,
> if I recall
> >>> > > correctly.
> >>>>>>>>>>> > >>>>> > > > >
> >>>>>>>>>>> > >>>>> > > > > H
> >>>>>>>>>>> > >>>>> > > > >
> >>>>>>>>>>> > >>>>> > > > > --- On Mon, 2/16/09, O'Hare, Mick (RBI-UK)
> >>>>>>>>>>> <Mick.O'Hare@> wrote:
> >>>>>>>>>>> > >>>>> > > > >
> >>>>>>>>>>> > >>>>> > > > >
> >>>>>>>>>>> > >>>>> > > > > From: O'Hare, Mick (RBI-UK) <Mick.O'Hare@>
> >>>>>>>>>>> > >>>>> > > > > Subject: RE: [dysosmia] Re: Also new
> >>>>>>>>>>> > >>>>> > > > > To: dysosmia@yahoogroups.com
> >>>>>>>>>>> <mailto:dysosmia%40yahoogroups.com>
> >>>>>>>>>>> <mailto:dysosmia%40yahoogroups.com>
> >>>>>>>>>>> > >>>>> > > > > Date: Monday, February 16, 2009, 4:46 AM
> >>>>>>>>>>> > >>>>> > > > >
> >>>>>>>>>>> > >>>>> > > > >
> >>>>>>>>>>> > >>>>> > > > > Harry, let me know how your DC visit goes
> >>>>>>>>>>> > >>>>> > > > >
> >>>>>>>>>>> > >>>>> > > > > Mick
> >>>>>>>>>>> > >>>>> > > > >
> >>>>>>>>>>>> > >>>>>> > > > > > ----------
> >>>>>>>>>>>> > >>>>>> > > > > > From: dysosmia@yahoogroup s.com on behalf of
> harryony1
> >>>>>>>>>>>> > >>>>>> > > > > > Reply To: dysosmia@yahoogroup s.com
> >>>>>>>>>>>> > >>>>>> > > > > > Sent: Sunday, February 15, 2009 11:06 PM
> >>>>>>>>>>>> > >>>>>> > > > > > To: dysosmia@yahoogroup s.com
> >>>>>>>>>>>> > >>>>>> > > > > > Subject: [dysosmia] Re: Also new
> >>>>>>>>>>>> > >>>>>> > > > > >
> >>>>>>>>>>>> > >>>>>> > > > > > I just knew one of the smells I get was
> >>>>>>>>>>>> something I used in my
> >>>>>>>>>>>> > >>>>>> > > > > > lifetime and you made that happen. Thank You.
> Playdough, duh!!
> >>>>>>>>>>>> > >>>>>> > > > > > Right now I am continuing the fried onion
smell
> that I cooked
> >>> > > 3 days
> >>>>>>>>>>>> > >>>>>> > > > > > ago, which is very strong. They did agree it
was
> strong while
> >>> > > I was
> >>>>>>>>>>>> > >>>>>> > > > > > cooking them but presnetly they can not smell
> onion anymore.
> >>> > > Oh
> >>>>>>>>>>>> > >>>>>> > > > > > Well !
> >>>>>>>>>>>> > >>>>>> > > > > > The first ENT you went to, was just as
> >>>>>>>>>>>> insensitive as mine,
> >>> > > however
> >>>>>>>>>>>> > >>>>>> > > > > > he did 87 more discoveries then mine. Mine
just
> said "you
> >>> > > should
> >>>>>>>>>>>> > >>>>>> > > > > > have it back in 12 months or less" and that
was
> 2 years ago!!
> >>> > > Of
> >>>>>>>>>>>> > >>>>>> > > > > > course that was after the ct, mri, and poking
a
> rod up my
> >>> > > nasel
> >>>>>>>>>>>> > >>>>>> > > > > > passage.
> >>>>>>>>>>>> > >>>>>> > > > > > Use the saline rinse and it should help with
the
> odors.
> >>>>>>>>>>>> > >>>>>> > > > > > I believe that I am at the stage you are in
but
> I came from
> >>> > > ZERO, so
> >>>>>>>>>>>> > >>>>>> > > > > > anything I can smell/taste now is a holiday
;).
> Few and far
> >>> > > inbetween
> >>>>>>>>>>>> > >>>>>> > > > > > but never-the-less still a happening even if
it
> is at 25
> >>> > > percent.
> >>>>>>>>>>>> > >>>>>> > > > > > I am visiting Washington D.C. for my second
> appointment with
> >>> > > Dr.
> >>>>>>>>>>>> > >>>>>> > > > > > Henkin this thursday and will update from
there.
> >>>>>>>>>>>> > >>>>>> > > > > >
> >>>>>>>>>>>> > >>>>>> > > > > > Good Luck
> >>>>>>>>>>>> > >>>>>> > > > > > Harry
> >>>>>>>>>>>> > >>>>>> > > > > >
> >>>>>>>>>>>> > >>>>>> > > > > > --- In dysosmia@yahoogroup s.com, "Jeannie"
> <jeanjeannie@ ...>
> >>> > > wrote:
> >>>>>>>>>>>> > >>>>>>> > > > > > >
> >>>>>>>>>>>> > >>>>>>> > > > > > > Hello to all. I've been reading posts on
this
> for quite some
> >>> > > time -
> >>>>>>>>>>>> > >>>>>> > > > > >
> >>>>>>>>>>>> > >>>>>>> > > > > > > but only became a member today. I wanted to
> thank those who
> >>> > > have
> >>>>>>>>>>>> > >>>>>>> > > > > > > taken the time to share their story...as it
> provides insight
> >>> > > to me
> >>>>>>>>>>>> > >>>>>>> > > > > > > (and how to apply to my personal case).
While
> everyone's
> >>> > > story and
> >>>>>>>>>>>> > >>>>>>> > > > > > > perspective is unique, it's good to know
that
> there are
> >>> > > others who
> >>>>>>>>>>>> > >>>>>>> > > > > > > provide support.
> >>>>>>>>>>>> > >>>>>>> > > > > > >
> >>>>>>>>>>>> > >>>>>>> > > > > > > As for me, my symptoms began in 5/2008. I'd
> been diagnosed
> >>> > > in
> >>>>>>>>>>>> > >>>>>>> > > > > > > February with RSV and told to wait it out.
In
> early May I
> >>>>>>>>>>>> > >>>>>>> > > > > > > experienced such terrible congestion - I
> could barely
> >>> > > function. I
> >>>>>>>>>>>> > >>>>>>> > > > > > > had used Flonase (combined with Allegra-D)
in
> the past for
> >>>>>>>>>>>> > >>>>>> > > > > > allergies,
> >>>>>>>>>>>> > >>>>>>> > > > > > > so my physician suggested to try Flonase
> again.
> >>>>>>>>>>>> > >>>>>>> > > > > > >
> >>>>>>>>>>>> > >>>>>>> > > > > > > Admittedly, it's difficult to determine the
> exact cause of
> >>> > > the
> >>>>>>>>>>>> > >>>>>>> > > > > > > onset...whether it was due to the URI, or
the
> Flonase. There
> >>> > > was
> >>>>>>>>>>>> > >>>>>> > > > > > one
> >>>>>>>>>>>> > >>>>>>> > > > > > > time where I used it and experienced a
> radiating pain on the
> >>> > > left
> >>>>>>>>>>>> > >>>>>>> > > > > > > side of my head and face. Within days, I
> noticed that I
> >>> > > could
> >>>>>>>>>>>> > >>>>>> > > > > > barely
> >>>>>>>>>>>> > >>>>>>> > > > > > > smell anything.
> >>>>>>>>>>>> > >>>>>>> > > > > > >
> >>>>>>>>>>>> > >>>>>>> > > > > > > As of now, there are still odors/vapors
that
> I cannot smell
> >>> > > - while
> >>>>>>>>>>>> > >>>>>> > > > > > I
> >>>>>>>>>>>> > >>>>>>> > > > > > > can distinguish that the odor of the air
> changes...I cannot
> >>>>>>>>>>>> > >>>>>>> > > > > > > distiguish a specific scent associated with
> it. For quite
> >>> > > some
> >>>>>>>>>>>> > >>>>>> > > > > > time,
> >>>>>>>>>>>> > >>>>>>> > > > > > > this was the same with all odors, but some
> have improved
> >>> > > over time.
> >>>>>>>>>>>> > >>>>>>> > > > > > >
> >>>>>>>>>>>> > >>>>>>> > > > > > > In the summer of 08, the absence of smell
> changed for many
> >>> > > odors
> >>>>>>>>>>>> > >>>>>> > > > > > for
> >>>>>>>>>>>> > >>>>>>> > > > > > > me. Detergents and shampoos smelled of
> asphalt (if the
> >>> > > detergent
> >>>>>>>>>>>> > >>>>>> > > > > > or
> >>>>>>>>>>>> > >>>>>>> > > > > > > shampoo was non-floral, berry scented).
> Coffee, urine, body
> >>> > > odor,
> >>>>>>>>>>>> > >>>>>>> > > > > > > diesel fuel, extreme skunk were also
> >>>>>>>>>>>> categorized as my "bad
> >>> > > smell",
> >>>>>>>>>>>> > >>>>>>> > > > > > > which smells of chemicals, rotting flesh,
> playdough and
> >>> > > burnt >
> >>>>>>>>>>>> > >>>>>>> > > > > > > coffee. In truth, this was (and continues
to
> be) the most
> >>>>>>>>>>>> > >>>>>>> > > > > > > disconcerting for me.
> >>>>>>>>>>>> > >>>>>>> > > > > > >
> >>>>>>>>>>>> > >>>>>>> > > > > > > In September, I visited my Neurologist who
> referred me to an
> >>>>>>>>>>>> > >>>>>>> > > > > > > ENT...which was a miserable experience. He
> had me sniff
> >>> > > upwards of
> >>>>>>>>>>>> > >>>>>>> > > > > > > 85 scratch and sniff cards and put salt and
> sugar on my
> >>> > > tongue. He
> >>>>>>>>>>>> > >>>>>>> > > > > > > said that since I only missed 5 - that I
> should get over it.
> >>>>>>>>>>>> > >>>>>>> > > > > > >
> >>>>>>>>>>>> > >>>>>>> > > > > > > Initially, I felt deflated, as I consider
> myself to be the
> >>> > > opposite
> >>>>>>>>>>>> > >>>>>>> > > > > > > of a hypochondriac - and I felt rather
> insulted. More
> >>> > > recently,
> >>>>>>>>>>>> > >>>>>> > > > > > I've
> >>>>>>>>>>>> > >>>>>>> > > > > > > seen a different ENT who seems open to
> entertaining my
> >>> > > symptoms and
> >>>>>>>>>>>> > >>>>>>> > > > > > > has scheduled a sinus CT scan this week.
> >>>>>>>>>>>> > >>>>>>> > > > > > >
> >>>>>>>>>>>> > >>>>>>> > > > > > > Admittedly, there are times when it feels
> like I'm living
> >>> > > life with
> >>>>>>>>>>>> > >>>>>>> > > > > > > the lights half on - however I have
> >>>>>>>>>>>> experienced some relief.
> >>> > > The
> >>>>>>>>>>>> > >>>>>>> > > > > > > asphalt smell has diminished quite a bit. I
> can smell things
> >>> > > now >
> >>>>>>>>>>>> > >>>>>>> > > > > > > that I couldn't six months ago. Sometimes
it
> depends on the
> >>> > > day.
> >>>>>>>>>>>> > >>>>>>> > > > > > > There are things that I still cannot smell
at
> all (garbage),
> >>> > > and
> >>>>>>>>>>>> > >>>>>>> > > > > > > there are times when the bad smell becomes
> overwhelming.
> >>>>>>>>>>>> > >>>>>>> > > > > > >
> >>>>>>>>>>>> > >>>>>>> > > > > > > Nonetheless, I feel happy to have stumbled
> upon this group -
> >>> > > as
> >>>>>>>>>>>> > >>>>>> > > > > > it's
> >>>>>>>>>>>> > >>>>>>> > > > > > > provided ideas and clinics to visit - and
> most of all a
> >>> > > glimmer of
> >>>>>>>>>>>> > >>>>>>> > > > > > > hope.
> >>>>>>>>>>>> > >>>>>>> > > > > > >
> >>>>>>>>>>>> > >>>>>>> > > > > > > Thanks,
> >>>>>>>>>>>> > >>>>>>> > > > > > > Jeannie
> >>>>>>>>>>>> > >>>>>>> > > > > > >
> >>>>>>>>>>>> > >>>>>> > > > > >
> >>>>>>>>>>>> > >>>>>> > > > > >
> >>>>>>>>>>>> > >>>>>> > > > > >
> >>>>>>>>>>>> > >>>>>> > > > > >
> >>>>>>>>>>>> > >>>>>> > > > > >
> >>>>>>>>>>> > >>>>> > > > >
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