Just to let you guys know I'll be gone for a week so you won't see any posts
from me unless something really good happens.

Be back probably next Saturday.

Have a good week all.

Betty
Madison, WI


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Christina - mine will be $300.00.  I went today to pick them up but the
Dr. didn't like the way they were done - rocker sole wasn't right he
said.  Didn't feel right either.  So I won't be getting them until
Saturday earliest.
Becky Deaver

Becky you mentioned your custom made shoes and I wondered how much they cost
if your ok with sharing. Mine cost anywhere from $500 to $800 a pair. I'm
just a curious one. hehe.

~~Christina


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Thanks for the welcome.. I'll keep you posted on anything I learn. :o)

~~Christina


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Hi Christina
	 Thanks for the feed back.  I have never heard of doctors doing
anything with people other than kids.  As a matter of fact, that seems to
be a major problem with many of us when we need some medical attention
that the AMC should be part of the consideration. (I'm not sure that was
an english sentence:)  Anyway, most my joints are effected and over the
years as an adult I have run into a few doctors who have been totally
stupid when it comes to the AMC (broke my elbow once and the orthopedic
dr.'s major observation was:  gee you have the smallest bones I've ever
seen in an adult --- this while I'm sitting there wondering if my elbow
will bend AT ALL now) Sorry to say this is typical of my dealings with
doctors as an adult with AMC.  If you find out anything about any study,
please let me know!
thanks
Becky Deaver

Hello all,
My name is Christina, I'm 21, and I have AMC. Hehe it sounds like I'm in AA
or something. Sorry if that came out sounding bad, I guess its just my odd
sense of humor. Anyway Theresa sent me the first letter of this group and I
went to the site to see what was being discussed. Well I joined soon after.
Becky, On your shoe issue I've been getting custom made shoes for awhile now.
They are wicked expensive but much better on the feet. I have this great guy
who makes them and he manages to give me a little style as well. He also lets
me tell him what ajustments I need done and fixes them without a second
thought. I hope the person who makes your shoes is as good as mine.
On the swelling of the feet and ankles I get that all the time too. For me it
doesnt matter if I walk alot or if I just sit in a chair my feet swell. Not
much I've found I can do other than take aleve it takes some of the pain
away.

Now I have a question, has anyone heard of any research done with AMC people
over the age of 17 or so.. leading into the adult era? It seems most is done
with children and when you get older you just kind of have to go on your own.
I dont mind but if there is something learned I'd love to see what it is.
I've not really had much learning on AMC until a few years ago it was mostley
me teaching the doctors about it and such.
Ok I think I've rambled on long enough. Hope to hear soon from you all.

Be well
~~Christina


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You have to register on yahoo when it ask for your email address enter the
AOL address. Then you send you email to the group at
"amc_adults@yahoogroups.com" and everyone one the group mailing list will get
it no matter what Internet Service Provider they have.

Denise
JRT's Rule!!!


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I am a not a computer expert!!  I want to be on this mailing list,
however, the only way I can seem to sign up is with this yahoo.com
adddress...since I only check my AOL email, how in the world do i get
it sent there?  I have been trying to do this for an hour...can
anyone tell me what to do?  Jeri

Is anyone wearing splints?  Or doing therapy?  As I mentioned once
before I had therapy for a few months for my hands.  My hands still
freeze up at times but not nearly as often or as much.  Just wondered.

Jen H  :)

hey there,
my fingers lock in place too, mostly my middle finger and it hurts when i
straighten it, i usually have to force it to straighten.

cheers
Speedie  (Jen.S)


>From: avrieldawn@...
>Reply-To: amc_adults@yahoogroups.com
>To: amc_adults@yahoogroups.com
>Subject: Re: [Adults AMC] new member
>Date: Fri, 6 Jul 2001 18:47:48 EDT
>
>my hands don't shake ... but my finger tend to lock in place or move on
>their
>own repeatedly.  My toes tend to do the same thing.  I think it's related
>to
>Arthritis but i'm not sure.  I'm 24 and starting to notice alot of
>different
>things .  My legs and feet also started swelling a year ago.  I haven't
>discovered the cause for that yet though.
>
>Sincerely,
>Farrah H.

_________________________________________________________________________
Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

I have changed IDs so don't be alarmed.  I'm the person who brought
up the arthritis and feet swelling.  Hope everyone had a great
weekend!

Jen

hi not sure how this works but if anyone wishes to e mail me please do so
_________________________________________________________________________
Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

hi! Im 35 (omy almost 36) with amc & i have had swelling in feet & ankles 4 a
few years now.  & the dr did say it IS arthritis. It seems i will ache no
matter if i do a lot of walkin or i just sit all day so i just do what i want
2 do. I dont take any kinda arthritis meds but i do take powdered asprin
often it helps with the pain/swelling. My hands dont shake at all, well
unless i drink a lot of mountain dew! lol,
~Theresa

my right ankle or what's left of it does that alot lately also..
most of me problems are one the right side the hip has been replaced
the knee was fused together at birth and so was the ankle but the dr.
said that the joint is still there and not sure why it swells.. Thank you
DR.. I knew that oh well just try to be careful and ice it if it helps
I just try and get mine up more and that helps me
Lisa


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Because of the disputes lately I was jsut wondering... is anyone
still planning to attend the picnic in Arlington July 14?  My family
was really looking forward to this.  My mom and step-dad have never
met anyone else with AMC besides me.  I have only met a few people.
Anyway, I was just asking.

Jen H.

My swelling shows up at night.  I do think if I am not on my feet it is
less.  I work in a library and my (so called) office is up a double
staircase (no bathroom on that floor either), so I go up and down those
many times per day as well as just walking back and forth doing
whatever.  Usually now my feet hurt so when I get home my husband does all
the cleaning up (he cooks too! :)
According to the foot doctor at the special shoe store I saw yesterday the
sore feet and pain I get around my hips should be gone with the
adjustments he'll make in the custom shoes.  I never thought to ask him
about the swelling.  But my ankles didn't really begin to swell until I
had the orthotics - which apparently weren't done correctly for what's
wrong with my feet...so maybe the new shoes will help that also.
Becky

--- In amc_adults@y..., avrieldawn@c... wrote:
> my hands don't shake ... but my finger tend to lock in place or
move on their
> own repeatedly.  My toes tend to do the same thing.  I think it's
related to
> Arthritis but i'm not sure.  I'm 24 and starting to notice alot of
different
> things .  My legs and feet also started swelling a year ago.  I
haven't
> discovered the cause for that yet though.
>
> Sincerely,
> Farrah H.
My hands "lock up"  I went to therapy for a few monthes for it.  I
was dignosed with Carpal Tunnel.  My doctor says its a result of the
AMC.  My hands started doing that about 4 years ago.

Jen

my hands don't shake ... but my finger tend to lock in place or move on their
own repeatedly.  My toes tend to do the same thing.  I think it's related to
Arthritis but i'm not sure.  I'm 24 and starting to notice alot of different
things .  My legs and feet also started swelling a year ago.  I haven't
discovered the cause for that yet though.

Sincerely,
Farrah H.

The swelling has occurred for the past 4 1/2 years.  The doctors says
its due to arthritis and being on my feet a lot.  I work as an
instructional aide in the public school system and attend college and
run my household (my husband, myself, and our dog),  So I'm
constantly on my feet.  Some days are worse than others, especially
in the winter. When does your swelling occur?  How often?

Jen H.

Jen you mentioned in a different post about your ankles:

My so-called ankles swell when I am on my feet a lot.  My doctor has
suggested elevating and icing my feet in the evenings


Is this something that has always happened to you when you've benn on your
feet ot much or is it a new developement?  I ask because it just started
to happen to me last year when I was 47.

thanks
Becky Deaver

I received your e-mail about being banned from another group.  I went
back and caught up, I haven't visited in awhile.  Boy, emotions sure
flew.  I am not sure what all the other problems were but I feel that
anyone with AMC who is interested should be free to join a support
group.  I am 27 and my feet and hands are affected.  Reading your
posts I have no problems with shoes, I wear tennis shoes mostly and
occassionally dress shoes --flats and 1/2 size difference bewteen
each shoe.  I do not have any shaking.  Can't help there.  Anyway,
have a great weekend!

Jen

Betty,

Thanks for joining. I always wondered why you and Owen had lost your
co-moderator status on that other list. I guess it was never brought
up in discussions cause I don't remember reading about it. All I know
is that one day you and Owen had stars next to your names and then a
few weeks later I noticed that they were gone.
I had already promised Jenny that she could help me, but I will let
you as well, but like I said in my first post, the moderators won't
have that much to do. Anyone is invited to join this list and there
is no screening process. The only authority you'll have would be to
suspend any unruly members, but if that situation were to arise, I
would hope that all the moderators would come together and decide as
a group, rather than hastily making a decision on their own.
I see no reason to think of situations like that occurring though.
This list is off to a great start and I hope it continues to be
enjoyable and valuable to you all.

=====
Dan

http://www.dango727.com
AOL IM - Dango727
Yahoo! - dango727

I never read all the messages on the other list either.

Alina


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My hands don't generally shake - except when I'm scared I guess :)  but
not in the way you mean.  Sometimes when I'm tired my insides feel like
jello - not sure if that counts for the same though.

Sorry I don't have anything similiar to discuss with you, but nice to see
you've posted.  Hope you continue to ask questions and share.

Becky Deaver

Most of you all ready know me, but I'll just say a few things about myself.

My name is Betty Hicks and I'm from Wisconsin, I have been on both lists and I
had been thinking about leaving them because it seemed like they dwell on a
subject far too long and it got to be really boring.  I believe you state both
sides and then drop it.  Short and sweet.

Another reason why I chose to leave the one list was that I was co-moderator of
it and all of a sudden Chris decided to take me off the moderator's list without
consulting me first.  I wrote him and asked him if he did it and why.  His reply
was that too many people were joining for the wrong reasons and that he wanted
the new members to write why they wanted to join and that he wanted full control
of that.  I felt that he didn't trust me enough to decide the membership from
reading the letters.

Dan said that he was going to have a second moderator besides Theresa.  I am
very interested in that position, Dan.  Please, Pretty Please!  Lol

Enough for now.

Betty
Madison, WI


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I've posted elsewhere in reply to Bill about shoes and feet problems and
was wondering if anyone on this list also had problems with shoes.  Mine
all began when I got orthotics.  Before I used to wear fat heels and did
just fine.  With the orthotics I ran into lots of -- and growing
problems-- with my feet which effected my legs and hips.  After a couple
of months my left shoe especially would begin to curve inward and the hip
pain and being unable to walk far at all would all begin again.  I won't
post my entire message here as I did at the other place, but I went back
to a shoestore where I spent lots of money on shoes and talked to them
about what happened....Upshot is i'll be getting custom shoes that will
accomodate better my various foot problems - but --get this -- will have
built up heels!  Heck I knew I should have just kept the original shoes
with heels.  By the way, I'm 48 and the only reason I had problems before
with my feet (why I ended up with orthotics in the first place) is because
I left the heels of my shoes get too worn and pulled muscles under my
right ankle.


Anyway, thought I'd ask for others experience while I'm (still) waiting
for a pizza delivery :)

thanks
Becky Deaver

hello everyone,
     i was on the avenues until dango got banned, so i sent in a
request to be removed from that so-called mailing list...if u were on
the avenues list u might know that i very rarely post...now that im
here, does anyone else hands shake?...mine shake when i get
excited...(i.e. whenever i get depressed or anything like that) and
sumtimes i start to shake all over...im not really an "adult" i'm 16,
but i dont think ill have a problem w/ "mature" content. so if u can,
reply to this please, thanx!

I never paid all that much attention to the other list anyway....lol

lol thanks Dan!!!!!!  I like the cool star by my name!!!!!!! :)
~Theresa

Hi all,

Thanks for joining this list. As I'm sure you all know by now, I was
banned from Christopher Johnson's list, so that is why this list was
created. Apparently opinions only count on his list if they're in
agreement with him. His list was getting too hostile anyway and
seemed to be falling apart, so I felt a second list was necessary. I
am not trying to compete with him, but I also wouldn't mind having at
least half of his members. I can only hope that many more people will
discover this list and sign up.
This list will not be heavily goverened. I may have created the list,
but I won't be looking over it with a microscope. I have appointed
Theresa as a moderator (oops, I forgot to mention that to
her...Theresa, you're the moderator...LOL) I will also be giving
moderator duties to one other member very shortly. Unfortunately,
since membership is not approved, the moderators won't have all that
much to do, but at least you'll get a cool looking star next to your
names...LOL
Well that's all for now. If you have any suggestions for the list,
please share them. Don't be afraid to start any discussions either.
This list is yours!

Thanks,

=====
Dan

http://www.dango727.com
AOL IM - Dango727
Yahoo! - dango727