Thank you Marie. I will certainly consider your advices! Your help is
very precious to me.

Nathalie



--- In adie_syndrome@yahoogroups.com, Rita Cullum <ritac42@...> wrote:
>
> Dear Worried Mom,
>
> I think I can say the light is an issue for everyone
> with adie's.  I wear sunglasses all the time.  Some
> people do develop headaches because of the sun, I am
> not one of them. If the sun is an issue for your
> daughter, then ask the eye doctor about lenses that
> auto-shade.  In fact if your daughter says the sun
> hurts her eyes, by all means do what ever it takes to
> shade the sun from her eyes. In answer to your 3rd
> question, yes, my reflexes are slow.  I have them, but
> a reflex check does not produce the same results as a
> normal person and I am not that ticklelish either.
> I've had adies for a little over eight years, as of
> yet, my pupil has not gotten small.  It isn't as huge
> as it use to be.  I have more trouble with shadows and
> I can't explain double vision, because it's not really
> double vision, but I see a thing and a shadow of the
> thing close to it.  I have adies in my left eye only.
> I do require reading glasses now.  I have contact
> lenses that keep distance looking the same and then
> plain dollar store reading glasses to read.  In the
> beginning I had to have bi-focals and  different
> strength in each eye because of the adies'. And to
> help her "just love her",  stess is a big factor with
> adies.  I'm not saying to spoil her, but notice when
> things make her nervous or afraid.  Maybe someone else
> can comment on helping more.  I find that when I eat a
> high protein/low carb diet my adies gets better, but
> I'm an adult not a child.  Above all help her to learn
> about her adies so she doesn't feel it's a death
> sentence.  Adies is mainly trial and error, what works
> for one doesn't for another, but it doesn't hurt to
> try different things as long as it is not life
> threatening.  Let her know that there are others in
> her shoes. My best to you and your daughter.  I will
> put her on my prayer list.
>
> ut--- natlevreault <natlevreault@...> wrote:
>
> > Hello everyone,
> >
> > My 10 year old daughter was just diagnosed with
> > Adie's syndrome.
> >
> > Going through the web, I realize that there isn't
> > much interesting
> > information about the symptoms and long term effects
> > on one's life.
> >
> > During the exam, the doctor tested her nervous
> > system reflexes (knees
> > and elbows) and to my big surprise she had none! He
> > confirmed this
> > was due to Adie's Syndrome.
> >
> > He also told me that with time her pupil (which is
> > quite dilated now)
> > will end up shrinking to a very small size.
> >
> > As I read your messages, I realize that some of you
> > have been
> > diagnosed a while ago...and I have a few unsanswered
> > questions (as it
> > is sometimes hard to get precise information from a
> > child and a
> > doctor) for which your help would be very
> > appreciated.
> >
> > 1. Is the light really an issue for someone with
> > that syndrome,
> > meaning is this what seems to cause the headaches?
> >
> > 2. She is now due for new prescription glasses;
> > would it be justified
> > to get her lens that auto-shade in the sun?
> >
> > 3. Have any of you noticed lack of nervous reflexes
> > also?
> >
> > 4. If her pupil ends up being very small eventually,
> > won't it be hard
> > for her to see in the dark?
> >
> > 5. Does it have any impact on your vision (reading
> > for example)?
> >
> > 5. Do you think there is anything I should be made
> > aware of to help
> > her?
> >
> > Thank you for your help.
> >
> > From a worried mom.
> >
> >
> >
> >
>
>
> __________________________________________________
> Do You Yahoo!?
> Tired of spam?  Yahoo! Mail has the best spam protection around
> http://mail.yahoo.com
>

Thank you very much Marie for your help. It is amazing that the
doctor didn't give me any advice! Amazing!
I really appreciate your advices.
Thanks!
Nathalie

--- In adie_syndrome@yahoogroups.com, Trisha Marie <qcgirl63@...>
wrote:
>
> As for me I am in to my 5 th yr and I just lost my reflexes this
year. Light does bother the eye or eyes. Try using dim lighting and
avoid overhead lights. Keep her sun vissor down in the car and make
sure she wears her sunglasses and a bucket hat if possible outside.
It's all about adjusting to your situation and everybodys case is
different. If all possible shorten her computer time and when she is
online adjust your monitor so it isn't as bright.
>
> natlevreault <natlevreault@...> wrote:   Hello everyone,
>
> My 10 year old daughter was just diagnosed with Adie's syndrome.
>
> Going through the web, I realize that there isn't much interesting
> information about the symptoms and long term effects on one's life.
>
> During the exam, the doctor tested her nervous system reflexes
(knees
> and elbows) and to my big surprise she had none! He confirmed this
> was due to Adie's Syndrome.
>
> He also told me that with time her pupil (which is quite dilated
now)
> will end up shrinking to a very small size.
>
> As I read your messages, I realize that some of you have been
> diagnosed a while ago...and I have a few unsanswered questions (as
it
> is sometimes hard to get precise information from a child and a
> doctor) for which your help would be very appreciated.
>
> 1. Is the light really an issue for someone with that syndrome,
> meaning is this what seems to cause the headaches?
>
> 2. She is now due for new prescription glasses; would it be
justified
> to get her lens that auto-shade in the sun?
>
> 3. Have any of you noticed lack of nervous reflexes also?
>
> 4. If her pupil ends up being very small eventually, won't it be
hard
> for her to see in the dark?
>
> 5. Does it have any impact on your vision (reading for example)?
>
> 5. Do you think there is anything I should be made aware of to help
> her?
>
> Thank you for your help.
>
> From a worried mom.
>
>
>
>
>
> ---------------------------------
>   YAHOO! GROUPS LINKS
>
>
>     Visit your group "adie_syndrome" on the web.
>
>     To unsubscribe from this group, send an email to:
>  adie_syndrome-unsubscribe@yahoogroups.com
>
>     Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>
> ---------------------------------
>
>
>
>
>
> ---------------------------------
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and save big.
>

Thank you for your advices! Yes, she has been wearing glasses for
about 5 years, for her 'close' vision. I am seeing an ophtalmologist
this week for a new prescription. I guess the Adie situation may
change the required prescription...

Thanks.

Nathalie


--- In adie_syndrome@yahoogroups.com, "MStafford" <Mstafford220@...>
wrote:
>
> Hope this helps:
> 1.  Light could cause the headaches.  You would also have to be
careful long
> term about the ultraviolet rays entering the pupil and causing
cateracts.
> 2.  That's up to you.  I found they do not get dark enough though.
> 3.  Yes. I have no knee reflex on the adie's side as well as a non-
sweating
> forearm.
> 4.  I've had adie since 1992 and it has not gotten to that point
yet even
> though it is smaller than it was at the beginning.
> 5.  Yes.  Does you daughter already wear glasses?  She may need
reading
> glasses or have to hold the material further away.  Or may need to
have
> glasses changed more ofter than one or two years.
>

Hope this helps:
1.  Light could cause the headaches.  You would also have to be careful long
term about the ultraviolet rays entering the pupil and causing cateracts.
2.  That's up to you.  I found they do not get dark enough though.
3.  Yes. I have no knee reflex on the adie's side as well as a non-sweating
forearm.
4.  I've had adie since 1992 and it has not gotten to that point yet even
though it is smaller than it was at the beginning.
5.  Yes.  Does you daughter already wear glasses?  She may need reading
glasses or have to hold the material further away.  Or may need to have
glasses changed more ofter than one or two years.

Dear Worried Mom,

I think I can say the light is an issue for everyone
with adie's.  I wear sunglasses all the time.  Some
people do develop headaches because of the sun, I am
not one of them. If the sun is an issue for your
daughter, then ask the eye doctor about lenses that
auto-shade.  In fact if your daughter says the sun
hurts her eyes, by all means do what ever it takes to
shade the sun from her eyes. In answer to your 3rd
question, yes, my reflexes are slow.  I have them, but
a reflex check does not produce the same results as a
normal person and I am not that ticklelish either.
I've had adies for a little over eight years, as of
yet, my pupil has not gotten small.  It isn't as huge
as it use to be.  I have more trouble with shadows and
I can't explain double vision, because it's not really
double vision, but I see a thing and a shadow of the
thing close to it.  I have adies in my left eye only.
I do require reading glasses now.  I have contact
lenses that keep distance looking the same and then
plain dollar store reading glasses to read.  In the
beginning I had to have bi-focals and  different
strength in each eye because of the adies'. And to
help her "just love her",  stess is a big factor with
adies.  I'm not saying to spoil her, but notice when
things make her nervous or afraid.  Maybe someone else
can comment on helping more.  I find that when I eat a
high protein/low carb diet my adies gets better, but
I'm an adult not a child.  Above all help her to learn
about her adies so she doesn't feel it's a death
sentence.  Adies is mainly trial and error, what works
for one doesn't for another, but it doesn't hurt to
try different things as long as it is not life
threatening.  Let her know that there are others in
her shoes. My best to you and your daughter.  I will
put her on my prayer list.

ut--- natlevreault <natlevreault@...> wrote:

> Hello everyone,
>
> My 10 year old daughter was just diagnosed with
> Adie's syndrome.
>
> Going through the web, I realize that there isn't
> much interesting
> information about the symptoms and long term effects
> on one's life.
>
> During the exam, the doctor tested her nervous
> system reflexes (knees
> and elbows) and to my big surprise she had none! He
> confirmed this
> was due to Adie's Syndrome.
>
> He also told me that with time her pupil (which is
> quite dilated now)
> will end up shrinking to a very small size.
>
> As I read your messages, I realize that some of you
> have been
> diagnosed a while ago...and I have a few unsanswered
> questions (as it
> is sometimes hard to get precise information from a
> child and a
> doctor) for which your help would be very
> appreciated.
>
> 1. Is the light really an issue for someone with
> that syndrome,
> meaning is this what seems to cause the headaches?
>
> 2. She is now due for new prescription glasses;
> would it be justified
> to get her lens that auto-shade in the sun?
>
> 3. Have any of you noticed lack of nervous reflexes
> also?
>
> 4. If her pupil ends up being very small eventually,
> won't it be hard
> for her to see in the dark?
>
> 5. Does it have any impact on your vision (reading
> for example)?
>
> 5. Do you think there is anything I should be made
> aware of to help
> her?
>
> Thank you for your help.
>
> From a worried mom.
>
>
>
>


__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

Hello everyone,

My 10 year old daughter was just diagnosed with Adie's syndrome.

Going through the web, I realize that there isn't much interesting
information about the symptoms and long term effects on one's life.

During the exam, the doctor tested her nervous system reflexes (knees
and elbows) and to my big surprise she had none! He confirmed this
was due to Adie's Syndrome.

He also told me that with time her pupil (which is quite dilated now)
will end up shrinking to a very small size.

As I read your messages, I realize that some of you have been
diagnosed a while ago...and I have a few unsanswered questions (as it
is sometimes hard to get precise information from a child and a
doctor) for which your help would be very appreciated.

1. Is the light really an issue for someone with that syndrome,
meaning is this what seems to cause the headaches?

2. She is now due for new prescription glasses; would it be justified
to get her lens that auto-shade in the sun?

3. Have any of you noticed lack of nervous reflexes also?

4. If her pupil ends up being very small eventually, won't it be hard
for her to see in the dark?

5. Does it have any impact on your vision (reading for example)?

5. Do you think there is anything I should be made aware of to help
her?

Thank you for your help.

From a worried mom.

Hello everyone,

My 10 year old daughter was just diagnosed with Adie's syndrome.

Going through the web, I realize that there isn't much interesting
information about the symptoms and long term effects on one's life.

During the exam, the doctor tested her nervous system reflexes (knees
and elbows) and to my big surprise she had none! He confirmed this
was due to Adie's Syndrome.

He also told me that with time her pupil (which is quite dilated now)
will end up shrinking to a very small size.

As I read your messages, I realize that some of you have been
diagnosed a while ago...and I have a few unsanswered questions (as it
is sometimes hard to get precise information from a child and a
doctor) for which your help would be very appreciated.

1. Is the light really an issue for someone with that syndrome,
meaning is this what seems to cause the headaches?

2. She is now due for new prescription glasses; would it be justified
to get her lens that auto-shade in the sun?

3. Have any of you noticed lack of nervous reflexes also?

4. If her pupil ends up being very small eventually, won't it be hard
for her to see in the dark?

5. Does it have any impact on your vision (reading for example)?

5. Do you think there is anything I should be made aware of to help
her?

Thank you for your help.

From a worried mom.

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Well, this is a fun one.  I started about 4 years ago with Adies in my
right eye.  This developed after a really bad sinus infection.  Now
both eyes are dialated.  It actually has helped the headaches because
both eyes are taking in the same amount of light now.  I still live in
my sunglasses but they are stylish so I don't mind too much.  Has
anyone else's eyes "compensated" like this??

I did have a bit of fun with it a couple of weeks ago.  Went to my
regular doctor and a med student was taking my history and totally
freaked out when he saw my eyes.  How is it that most of the medical
community has no idea of this condition??  He spent an extra 30 minutes
with me talking about Adies. I told him to look up this group to see
what everyone else deals with.

Everyone have a great night!  

Well, this is a fun one.  I started about 4 years ago with Adies in my
right eye.  This developed after a really bad sinus infection.  Now
both eyes are dialated.  It actually has helped the headaches because
both eyes are taking in the same amount of light now.  I still live in
my sunglasses but they are stylish so I don't mind too much.  Has
anyone else's eyes "compensated" like this??

I did have a bit of fun with it a couple of weeks ago.  Went to my
regular doctor and a med student was taking my history and totally
freaked out when he saw my eyes.  How is it that most of the medical
community has no idea of this condition??  He spent an extra 30 minutes
with me talking about Adies. I told him to look up this group to see
what everyone else deals with.

Everyone have a great night!

Dear Kath ,

 

I share your thinking on the medical profession as I came up with the same lack of understanding ,strangely enough this has recent;y improved ,I am working in China now fpr more that two years and was gobsmacked when the local doctor told me I had Aidies , she was very up to date on this condition and it appears that she had a lot of experience.

She told me dont worry you have to live with Aidies and dont die with it neither will you end up with a walking cane unless some other illness befalls you as well.

I have had this condition for more than 20 years and now forget about it , yes there are headaches but you can deal with this , I agree done let people mess with you eyes

 

Hope a little comfort in theis finding

 

Regards

 

Bob Batey

Denise Thilmony <pollyanna95926@...> wrote:

Hi,
I just have a quick question for you. Can you tell me
the medicine that your doctor was referring to? I am
curious as to what kind of side effects that the
medicine in question might have. I take Pilocarpine
drops and I worry about the side effects that they
might have. Although, I have read several people that
take them, without any problems.
Thank you,
Denise

--- Rita Cullum <ritac42@...> wrote:

> When I went to the nuro-opthamologist, he put a
> solution of medicine that had actual cocaine in my
> eyes to make sure I had Adies.  My pupil did what it
> was suppose to do and he announced I had Adies.
> Then
> I had to do some eye exercises with these moving
> beams
> of lights and dots and a control in my hand to push
> when I saw these lights and dots.  He told me that
> there was nothing to do about Adies and the medicine
> he could prescribe had bad side effects, but he did
> give me the choice.  I left owing a big bill for a
> second opinion that I had Adies.
>
> --- ozzymommy1962 <ozzymommy1962@...> wrote:
>
> >      Wow - so many people with the same problem! I
> > thought I was the
> > only one with this *syndrome*. Quite the
> frustrating
> > little bugger -
> > it is! I went to the regular doc yesterday. The
> > neurologist wanted
> > her to perscribe drugs for the headaches. Why
> didn't
> > He help me with
> > that??? I am VERY sceptical of docs., and will not
> > go through life
> > all drugged up (unless I was terminal). They just
> > seem to make a bit
> > too many mistakes, so I always question their
> > decisions - ticking off
> > more than my share of professionals, I'm sure,
> > mainly the one's that
> > feel that patients should be seen and not heard.
> >      Anyway, she perscribed Triazalam, to help me
> > sleep, which I will
> > gladly take being as I haven't slept *normal* in
> > close to 25 years.
> > Does anyone have problems sleeping????
> >      She aslo ordered me up some beta blockers -
> > Atenolol - to
> > prevent migraines. I have very low blood pressure
> as
> > it is and don't
> > want to take this. I e-mailed the doc. and asked
> her
> > if there was
> > anything else I could use. Anyone else have
> chronic
> > migraines????
> >      The last drug she ordered me was Amerge, a
> six
> > pill perscription
> > that costs WAY too much. So, I cannot justify the
> > cost and will not
> > be taking those either.
> >      This doc. never even heard of Holmes Adies
> > Syndrome!!! She was
> > asking me questions!?!? I am supposed to go and
> see
> > a neuro -
> > opthomologist (spelling???) Honestly, I don't know
> > what he is
> > supposed to do to help me. Has anyone else gone to
> > one of these
> > specialists??? I won't let him mess with my
> pupils.
> >      I hope that I am doing this correctly. Am I
> > supposed to go to
> > the site and post - or answer e-mails??? Do the
> > e-mails go to this
> > site as well as the individuals???
> >      The neurologist told me that I will end up
> > using a cain - anyone
> > have that prognosis yet??? Does anyone know if the
> > joints are
> > affected to the point of cains, or walkers, or
> > wheelchairs???
> >      Does anyone know of any books that are aimed
> at
> > Adies and it's
> > wonderful little *syndrome*???? (excuse the
> attitude
> > please - it's a
> > very sunny day)
> >       
> >        Hope to hear from someone soon,
> >                Thanks,
> >                 Kath
> >     
> >
> >
> >
> >
> >
> >
>
>
> __________________________________________________
> Do You Yahoo!?
> Tired of spam?  Yahoo! Mail has the best spam
> protection around
> http://mail.yahoo.com
>


__________________________________________________
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Tired of spam?  Yahoo! Mail has the best spam protection around
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---

Yahoo! Cars NEW - sell your car and browse thousands of new and used cars online search now

---

Hi,
I just have a quick question for you. Can you tell me
the medicine that your doctor was referring to? I am
curious as to what kind of side effects that the
medicine in question might have. I take Pilocarpine
drops and I worry about the side effects that they
might have. Although, I have read several people that
take them, without any problems.
Thank you,
Denise

--- Rita Cullum <ritac42@...> wrote:

> When I went to the nuro-opthamologist, he put a
> solution of medicine that had actual cocaine in my
> eyes to make sure I had Adies.  My pupil did what it
> was suppose to do and he announced I had Adies.
> Then
> I had to do some eye exercises with these moving
> beams
> of lights and dots and a control in my hand to push
> when I saw these lights and dots.  He told me that
> there was nothing to do about Adies and the medicine
> he could prescribe had bad side effects, but he did
> give me the choice.  I left owing a big bill for a
> second opinion that I had Adies.
>
> --- ozzymommy1962 <ozzymommy1962@...> wrote:
>
> >      Wow - so many people with the same problem! I
> > thought I was the
> > only one with this *syndrome*. Quite the
> frustrating
> > little bugger -
> > it is! I went to the regular doc yesterday. The
> > neurologist wanted
> > her to perscribe drugs for the headaches. Why
> didn't
> > He help me with
> > that??? I am VERY sceptical of docs., and will not
> > go through life
> > all drugged up (unless I was terminal). They just
> > seem to make a bit
> > too many mistakes, so I always question their
> > decisions - ticking off
> > more than my share of professionals, I'm sure,
> > mainly the one's that
> > feel that patients should be seen and not heard.
> >      Anyway, she perscribed Triazalam, to help me
> > sleep, which I will
> > gladly take being as I haven't slept *normal* in
> > close to 25 years.
> > Does anyone have problems sleeping????
> >      She aslo ordered me up some beta blockers -
> > Atenolol - to
> > prevent migraines. I have very low blood pressure
> as
> > it is and don't
> > want to take this. I e-mailed the doc. and asked
> her
> > if there was
> > anything else I could use. Anyone else have
> chronic
> > migraines????
> >      The last drug she ordered me was Amerge, a
> six
> > pill perscription
> > that costs WAY too much. So, I cannot justify the
> > cost and will not
> > be taking those either.
> >      This doc. never even heard of Holmes Adies
> > Syndrome!!! She was
> > asking me questions!?!? I am supposed to go and
> see
> > a neuro -
> > opthomologist (spelling???) Honestly, I don't know
> > what he is
> > supposed to do to help me. Has anyone else gone to
> > one of these
> > specialists??? I won't let him mess with my
> pupils.
> >      I hope that I am doing this correctly. Am I
> > supposed to go to
> > the site and post - or answer e-mails??? Do the
> > e-mails go to this
> > site as well as the individuals???
> >      The neurologist told me that I will end up
> > using a cain - anyone
> > have that prognosis yet??? Does anyone know if the
> > joints are
> > affected to the point of cains, or walkers, or
> > wheelchairs???
> >      Does anyone know of any books that are aimed
> at
> > Adies and it's
> > wonderful little *syndrome*???? (excuse the
> attitude
> > please - it's a
> > very sunny day)
> >       
> >        Hope to hear from someone soon,
> >                Thanks,
> >                 Kath
> >     
> >
> >
> >
> >
> >
> >
>
>
> __________________________________________________
> Do You Yahoo!?
> Tired of spam?  Yahoo! Mail has the best spam
> protection around
> http://mail.yahoo.com
>


__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

Hi,
I just have a quick question for you. Can you tell me
the medicine that your doctor was referring to? I am
curious as to what kind of side effects that the
medicine in question might have. I take Pilocarpine
drops and I worry about the side effects that they
might have. Although, I have read several people that
take them, without any problems.
Thank you,
Denise

--- Rita Cullum <ritac42@...> wrote:

> When I went to the nuro-opthamologist, he put a
> solution of medicine that had actual cocaine in my
> eyes to make sure I had Adies.  My pupil did what it
> was suppose to do and he announced I had Adies.
> Then
> I had to do some eye exercises with these moving
> beams
> of lights and dots and a control in my hand to push
> when I saw these lights and dots.  He told me that
> there was nothing to do about Adies and the medicine
> he could prescribe had bad side effects, but he did
> give me the choice.  I left owing a big bill for a
> second opinion that I had Adies.
>
> --- ozzymommy1962 <ozzymommy1962@...> wrote:
>
> >      Wow - so many people with the same problem! I
> > thought I was the
> > only one with this *syndrome*. Quite the
> frustrating
> > little bugger -
> > it is! I went to the regular doc yesterday. The
> > neurologist wanted
> > her to perscribe drugs for the headaches. Why
> didn't
> > He help me with
> > that??? I am VERY sceptical of docs., and will not
> > go through life
> > all drugged up (unless I was terminal). They just
> > seem to make a bit
> > too many mistakes, so I always question their
> > decisions - ticking off
> > more than my share of professionals, I'm sure,
> > mainly the one's that
> > feel that patients should be seen and not heard.
> >      Anyway, she perscribed Triazalam, to help me
> > sleep, which I will
> > gladly take being as I haven't slept *normal* in
> > close to 25 years.
> > Does anyone have problems sleeping????
> >      She aslo ordered me up some beta blockers -
> > Atenolol - to
> > prevent migraines. I have very low blood pressure
> as
> > it is and don't
> > want to take this. I e-mailed the doc. and asked
> her
> > if there was
> > anything else I could use. Anyone else have
> chronic
> > migraines????
> >      The last drug she ordered me was Amerge, a
> six
> > pill perscription
> > that costs WAY too much. So, I cannot justify the
> > cost and will not
> > be taking those either.
> >      This doc. never even heard of Holmes Adies
> > Syndrome!!! She was
> > asking me questions!?!? I am supposed to go and
> see
> > a neuro -
> > opthomologist (spelling???) Honestly, I don't know
> > what he is
> > supposed to do to help me. Has anyone else gone to
> > one of these
> > specialists??? I won't let him mess with my
> pupils.
> >      I hope that I am doing this correctly. Am I
> > supposed to go to
> > the site and post - or answer e-mails??? Do the
> > e-mails go to this
> > site as well as the individuals???
> >      The neurologist told me that I will end up
> > using a cain - anyone
> > have that prognosis yet??? Does anyone know if the
> > joints are
> > affected to the point of cains, or walkers, or
> > wheelchairs???
> >      Does anyone know of any books that are aimed
> at
> > Adies and it's
> > wonderful little *syndrome*???? (excuse the
> attitude
> > please - it's a
> > very sunny day)
> >
> >        Hope to hear from someone soon,
> >                Thanks,
> >                 Kath
> >
> >
> >
> >
> >
> >
> >
>
>
> __________________________________________________
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> protection around
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Hi Lucy
thanks i will try some of the things you mentioned, my daughter
suffers alot with sinus problems, i read that dairy products, produces
mucus which can worsen the condition, i don't know if you know that, i
told my daughter this but she won't give up cheese or other dairy
products, to find out if it makes things better, she has a constant
cold and sinus most of the time.
Anyway i hope you have a good pregnancy and all goes well, its so
exciting a new baby, look after yourself.
Love Michaela x

hiya
congrats on becoming a grandmother!!
i have reflexology and use homeopathic remedies.  i
find it takes a little longer for results but they are
more long term, also something called phytobiophysics
which has been amazing for my sinus problems. it helps
more because it gives you some possible answers as to
why the body is imbalanced i.e viruses you may be
carrying etc.
as i said each to their own but if it helps anyone
else then that is great.
i hope all is well with you
lucy
--- michaela_rees <michaela_rees@...> wrote:


---------------------------------
Hi Lucy
Thats Great news that your having a baby, i hope
everything goes well
and that you will be very happy.
Ive just become a grandmother and she's beautiful, her
name is Holly.
You said you had treatments of some kind that helped
you, can you tell
me what you had, im interested in natural treatment
and would prefer
that then stuff from the doctors, which don't really
work anyway and
give bad side effects.
Sorry i did't meet up with you we didn't get much time
in London when
i went to Moorfields, i was in there for five hours
waiting to see the
doctor, for him to spend ten minutes with him waste of
time.
We are planning to come down again for a few days
break in tha near
future maybe we can met up then.
Michaela






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When I went to the nuro-opthamologist, he put a
solution of medicine that had actual cocaine in my
eyes to make sure I had Adies.  My pupil did what it
was suppose to do and he announced I had Adies.  Then
I had to do some eye exercises with these moving beams
of lights and dots and a control in my hand to push
when I saw these lights and dots.  He told me that
there was nothing to do about Adies and the medicine
he could prescribe had bad side effects, but he did
give me the choice.  I left owing a big bill for a
second opinion that I had Adies.

--- ozzymommy1962 <ozzymommy1962@...> wrote:

>      Wow - so many people with the same problem! I
> thought I was the
> only one with this *syndrome*. Quite the frustrating
> little bugger -
> it is! I went to the regular doc yesterday. The
> neurologist wanted
> her to perscribe drugs for the headaches. Why didn't
> He help me with
> that??? I am VERY sceptical of docs., and will not
> go through life
> all drugged up (unless I was terminal). They just
> seem to make a bit
> too many mistakes, so I always question their
> decisions - ticking off
> more than my share of professionals, I'm sure,
> mainly the one's that
> feel that patients should be seen and not heard.
>      Anyway, she perscribed Triazalam, to help me
> sleep, which I will
> gladly take being as I haven't slept *normal* in
> close to 25 years.
> Does anyone have problems sleeping????
>      She aslo ordered me up some beta blockers -
> Atenolol - to
> prevent migraines. I have very low blood pressure as
> it is and don't
> want to take this. I e-mailed the doc. and asked her
> if there was
> anything else I could use. Anyone else have chronic
> migraines????
>      The last drug she ordered me was Amerge, a six
> pill perscription
> that costs WAY too much. So, I cannot justify the
> cost and will not
> be taking those either.
>      This doc. never even heard of Holmes Adies
> Syndrome!!! She was
> asking me questions!?!? I am supposed to go and see
> a neuro -
> opthomologist (spelling???) Honestly, I don't know
> what he is
> supposed to do to help me. Has anyone else gone to
> one of these
> specialists??? I won't let him mess with my pupils.
>      I hope that I am doing this correctly. Am I
> supposed to go to
> the site and post - or answer e-mails??? Do the
> e-mails go to this
> site as well as the individuals???
>      The neurologist told me that I will end up
> using a cain - anyone
> have that prognosis yet??? Does anyone know if the
> joints are
> affected to the point of cains, or walkers, or
> wheelchairs???
>      Does anyone know of any books that are aimed at
> Adies and it's
> wonderful little *syndrome*???? (excuse the attitude
> please - it's a
> very sunny day)
>
>        Hope to hear from someone soon,
>                Thanks,
>                 Kath
>
>
>
>
>
>
>


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Hi Lucy
Thats Great news that your having a baby, i hope everything goes well
and that you will be very happy.
Ive just become a grandmother and she's beautiful, her name is Holly.
You said you had treatments of some kind that helped you, can you tell
me what you had, im interested in natural treatment and would prefer
that then stuff from the doctors, which don't really work anyway and
give bad side effects.
Sorry i did't meet up with you we didn't get much time in London when
i went to Moorfields, i was in there for five hours waiting to see the
doctor, for him to spend ten minutes with him waste of time.
We are planning to come down again for a few days break in tha near
future maybe we can met up then.
Michaela

hi everyone
i read all your messages with interest, i've now had
adies for about 3 years, i just wanted to add that
although everyone has their own way of treating their
symptoms - i have only really used an alternative
approach as i don't trust western medicine terribly
most of the time! all i can report is that i've found
it terribly effective and insightful - so much so that
i don't ever really think about the condition much
anymore. this obviously varies from person to person
but hope that this is helpful.
i'm also pregnant now and have gone from someone who
lost their confidence getting this condition to having
a really good life again.
hope you are all well
lucy



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Hi Petra
I used a low dose of pilocarpin yesterday, and i did't feel as bad
this time, i think it helped me a bit outside in the natural light,
but when i went into the shop with alot of halogen lights i started to
get really bad headaches so i left the shop.
I find halogen lights terrible, i can't go into shops with these
lights, they make me really ill and in so much pain and thats with
sunglasses and a cap on.
Does anybody else find these lights intolerable? there almost in every
shop these days, the shops are getter brighter with all these spot
lights its becomming more impossible to go in them.
Im thinking of shopping from catalogues for my clothes, i think it
will be less stressful.
Regards to all
Michaela

Kath,
     Not much is known about this syndrome.  Please be aware that other
illnesses share some of the same symptoms.
      The neurologist I saw was not impressed with my Adie Syndrome.
I'd be curious to know why the neurologist you saw has already fortold a
future with canes and wheelchairs.  I have not seen any long term
information, and  I am also interested in muscle and joint problems.
     I have had this syndrome since 1992.
ms

Kath,
      Not much is known about this syndrome.  Please be aware that other
illnesses share some of the same symptoms.
       The neurologist I saw was not impressed with my Adie Syndrome.
I'd be curious to know why the neurologist you saw has already fortold a
future with canes and wheelchairs.  I have not seen any long term
information, and  I am also interested in muscle and joint problems.
      I have had this syndrome since 1992.
ms

Wow - so many people with the same problem! I thought I was the
only one with this *syndrome*. Quite the frustrating little bugger -
it is! I went to the regular doc yesterday. The neurologist wanted
her to perscribe drugs for the headaches. Why didn't He help me with
that??? I am VERY sceptical of docs., and will not go through life
all drugged up (unless I was terminal). They just seem to make a bit
too many mistakes, so I always question their decisions - ticking off
more than my share of professionals, I'm sure, mainly the one's that
feel that patients should be seen and not heard.
      Anyway, she perscribed Triazalam, to help me sleep, which I will
gladly take being as I haven't slept *normal* in close to 25 years.
Does anyone have problems sleeping????
      She aslo ordered me up some beta blockers - Atenolol - to
prevent migraines. I have very low blood pressure as it is and don't
want to take this. I e-mailed the doc. and asked her if there was
anything else I could use. Anyone else have chronic migraines????
      The last drug she ordered me was Amerge, a six pill perscription
that costs WAY too much. So, I cannot justify the cost and will not
be taking those either.
      This doc. never even heard of Holmes Adies Syndrome!!! She was
asking me questions!?!? I am supposed to go and see a neuro -
opthomologist (spelling???) Honestly, I don't know what he is
supposed to do to help me. Has anyone else gone to one of these
specialists??? I won't let him mess with my pupils.
      I hope that I am doing this correctly. Am I supposed to go to
the site and post - or answer e-mails??? Do the e-mails go to this
site as well as the individuals???
      The neurologist told me that I will end up using a cain - anyone
have that prognosis yet??? Does anyone know if the joints are
affected to the point of cains, or walkers, or wheelchairs???
      Does anyone know of any books that are aimed at Adies and it's
wonderful little *syndrome*???? (excuse the attitude please - it's a
very sunny day)

        Hope to hear from someone soon,
                Thanks,
                 Kath

--Hallo Michaela, I had very similar symptoms and now I use a very low
dosage. I get drops from my pharmacy that contains 2 ml Pilocarpin 1%
drops in 8 ml of Dry-Eye-Drops. It works very fine for me, I normally
uses them twice a day, but I needed some trying to find the right
dosage. Hope I can help you with my experiences,
Petra
  - In adie_syndrome@yahoogroups.com, "michaela_rees"
<michaela_rees@y...> wrote:
>
> Hi Julia
> I have tried pilicarpine, but i still got the pain and when it srunk
> my pupil down, i got pain from that too and also i was getting
> tightness across my chest every time i used it which took hours to
> ease off, so im not sure if i should try them again.
> what kind of symptoms did you first get from using them and how long
> before you got more use to them.
> KInd Regards
> Michaela
>

Hi Julia
I have tried pilicarpine, but i still got the pain and when it srunk
my pupil down, i got pain from that too and also i was getting
tightness across my chest every time i used it which took hours to
ease off, so im not sure if i should try them again.
what kind of symptoms did you first get from using them and how long
before you got more use to them.
KInd Regards
Michaela