hi

[Guest guest]

Oh my gosh Amber, that is my Liz! Her shoes are always untied, she is horrible at making her bed and I have to inspect her every morning to make sure her shirt is not on backwards...but she is a whiz at video games and can read a sizable chapter book in two days. From: evans.amber77@...Date: Mon, 29 Mar 2010 22:10:49 -0700Subject: ( ) hi

Thats was pretty much zach at that age. Video games that adults cannot figure out he finished in an hour! Now when it came to doing things that a simple for other kids, he had no clue. he could not tie his shoes untill he was 9 and even now at 10 we just buy slip ons for him, he stresses out about the laces coming undone. good luck!

Hotmail: Trusted email with powerful SPAM protection. Sign up now.

[Guest guest]

Hi na,

 

I was diagnosed at 35 too!  That was 19 yrs ago.  Now-a-days there are more

options w/the various drugs.  You may have to experiment a bit to find which

one(s) work best for you.  But there is hope!  Also remember to keep a

positive attitude as much as you can.  Although sometimes that is really hard

to do. 

 

And everyone's body is different.  For me, this is a disease of ups and

downs.  Good days, bad days.  I have learned to pace myself on the good ones,

otherwise I over-do it and then really pay for it.  Try to enjoy the good days

and remember on the bad days that this too shall pass.  And don't be afraid to

ask for help.  That's the hardest part for me as I was always the one who took

care of everyone else.  Now I'm the one who needs taking care of!  LOL.

 

I never had problems w/fatigue until the past year.  Otherwise I simply plowed

through the pain.  Now if I go grocery shopping in the morning, I am exhausted

the rest of the day and maybe into the next one too.  So I have to plan my

outings and limit them to 2 or maybe 3 at the most, a week.  But remember, this

is me and this is 19 yrs into the disease.  Your mileage will vary, I'm sure.

 

Most of all, remember to come here for support.  I can't tell you how much

comfort it has been to me to finally have a group who understands what I am

going through.  Before I joined this group, I felt so alone.  Just knowing

that others are going through the same thing is huge. 

 

Blessings,

Sheryl

From: na <breezerdecker@...>

Subject: [ ] Hi

Date: Sunday, June 13, 2010, 10:18 PM

 

Hi my name is na in California and I just got diagnosed (by my family Dr)

with RA two weeks ago. I am a very active 35yrs old with two young kids and am a

nervous wreck about what this actually means for my lifestyle change. My

grandmother had RA in her early 20's and was legally disabled by the time I was

born. My appt with the specialist is on June 23rd but I am so worried and am

wondering if I am just going to worry for the next 10 days! Also my Dr said that

my protein levels are way low-what does that mean? Also is it normal to be

completely exhausted by 3pm everyday-I have never been this way in my entire

life.

If anyone has any experience I would love to hear it.

Thanks,

na

RA and Chronic Fatigue Syndrome (since 1992)

[Guest guest]

Sorry to hear you've joined the ranks, na. Take a deep breath and slowly

let it out. I was just as freaked when I got diagnosed- my grandma had RA too

and I was upset for the same reasons. I was convinced that by the time I reached

50 I'd be in a wheelchair because of this. Great medications have been developed

that help dramatically slow this sucker. Our grandmothers didn't have any

medical help at all and that is why they became disabled. We won't get that way

anytime soon! Chin up! I've been through Methotrexate, Plaquenil, Prednisone,

sulfasalazine and am on Arava and Orencia now. With a little pain medication at

night I am doing quite well. I'm coming up on 43 and don't anticipate a

wheelchair until I want one in my 80s or 90s and even then just for laziness!

I don't know about the protein levels as I honestly never paid much attention to

mine. However the exhaustion? Yes, it is normal. That was the hardest adjustment

for me as I was very very active outside the house. When I'm not working I try

to build a 1-2 hour nap into my days so that I'm refreshed before the kids get

home from school.

I wish things were different and accepting that I will have a much different

level of activity was very hard for me. Over time I have studied RA as much as I

can and as a result I'm more relaxed about my future physical situation.

Patience seems to be the key. It took my Rheumys about 2 years to find the right

medication mix to help me. The thing to remember is that these medications take

3-6 months to take effect so that's why you must be patient. Just remember that

this group is here for you anytime you need us! You WILL be able to take care of

your kids and I'm sure you are a great Mom. It really will be OK.

Dalanne

Very wet East Central Illinois

>

> Hi my name is na in California and I just got diagnosed (by my family Dr)

with RA two weeks ago. I am a very active 35yrs old with two young kids and am a

nervous wreck about what this actually means for my lifestyle change. My

grandmother had RA in her early 20's and was legally disabled by the time I was

born. My appt with the specialist is on June 23rd but I am so worried and am

wondering if I am just going to worry for the next 10 days! Also my Dr said that

my protein levels are way low-what does that mean? Also is it normal to be

completely exhausted by 3pm everyday-I have never been this way in my entire

life.

> If anyone has any experience I would love to hear it.

>

> Thanks,

> na

> RA and Chronic Fatigue Syndrome (since 1992)

>

[Guest guest]

Hi and Welcome,

Yes we have members here that have klinefelters and I hope they see your post

and get back to you if not keep bumping it. Also try doing a search in the

messages section from the home page. Here is a link to one I just did over 600

hits.

/msearch?query=Klinefelters & su\

bmit=Search & charset=windows-1252

Your not alone here and even us men on just TRT can still help have you had labs

lately if so can you post them with the units and ranges and have you had

Estradiol levels checked this is the bad guy for all or us it undoes all the

good TRT dose and will kill your sex life.

Co-Moderator

Phil

> From: <daviddias25@...>

> Subject: Hi

>

> Date: Wednesday, August 4, 2010, 5:29 AM

> Hi i'm i have klinefelters

> syndrome xxy

> i was diagnosed back in 2001 after a trip to the fertility

> clinic,

> have been taking Testosterone Therapy since, i have small

> testicles which i'm very embarrassed about, even though i

> was made that way i wish mine were like every other male out

> there, i have suffered with depression and anxiety for a

> long time, i'm currently on medication for these problems,

> i'm 6ft 2  32 years old and over weight and have never

> ever met another person with xxy, are we the same, could it

> be true that i'm not the only one going through the troubles

> that i am, i wish i knew, i don't fit in with males

> socially, always found it hard relating to them, fleeting

> thoughts of suicide haunts me every day. if i could just

> meet somebody an xxy like in person then all would be fine,

> there would be so much to talk about, anyway thanks hope you

> enjoy the read.

>

>

>

> ------------------------------------

>

>

[Guest guest]

Once my son was old enough to stay home, I would let him sometimes. I would not do this all of the time because I wanted him to be there to support his sister at her events, so he could practice how to act in those situations, and because I missed him and wanted him with me, but I also wanted to make sure my daughter was the main focus at times, too. That's why I allowed him to stay home probably half of the time. Now that he's older and in much better control of himself in these situations, it's more likely he'll come with us.Sent via BlackBerry by AT&TFrom: C <lisac5432161@...>Sender: Date: Fri, 3 Sep 2010 18:02:59 -0700 (PDT)< >Reply Subject: ( ) Hi Hi, I am new to the group. I have twin boy that are almost 15, one has Asperger's. I then have another son who is almost 13. I have tried so many things for my son, I can't even remember them all (nor do I care to add up the cost), with little success. I found that social groups were always so disappointing because after a few weeks, he would figure out how to manipulate his way thru it and we never ever saw any carry over. The biggest issue we are dealing with right now is that my other 2 kids are always being embarrassed by things he says or does..........it's extremely stressful for everyone. Much of the problem is that he doesn't really want to go to their sporting events, etc.........he would much rather stay home. As much as I know he needs to get out and about, lately I find it so much easier to just let him stay home and avoid any "outbursts" in public. Any suggestions for dealing with this? Anyway, just looking to hear other people's experiences and bounce things off the group.

[Guest guest]

~ Can't wait to hear feedback from everyone. I also have twins who are 15

and an 8 year old. This has been something we have struggled with for a long

time. My son without AS has a great group of friends that he does things with

but does not want to include his brother because of the embarrasement it has

caused. We have struggled between allowing him to keep his own friends by not

including his brother but also want him to include his brother because he

doesn't have friends. We have told him that he doesn't always have to include

his brother but it would be the nice thing to do occasionally. We've expressed

the importance of him standing up for his brother if things don't go well

(whether he is with him or not). We know that this is putting him in an awkward

position but feel it's important for both of them. The 8 year old presents a

whole other set of issues. It's really hard when the 8 year old has more social

and life skills than the 15 year old. Praising one for the skills he has

without making the one who struggles feel bad is difficult. Hope this makes

some sense. Glad someone else has twins with the same issues.

---- C <lisac5432161@...> wrote:

> Hi,

>

> I am new to the group.  I have twin boy that are almost 15, one has

Asperger's. 

> I then have another son who is almost 13. 

>

> I have tried so many things for my son, I can't even remember them all (nor do

I

> care to add up the cost), with little success.  I found that social groups

were

> always so disappointing because after a few weeks, he would figure out how to

> manipulate his way thru it and we never ever saw any carry over.

>

> The biggest issue we are dealing with right now is that my other 2 kids are

> always being embarrassed by things he says or does..........it's extremely

> stressful for everyone.  Much of the problem is that he doesn't really want

to

> go to their sporting events, etc.........he would much rather stay home.  As

> much as I know he needs to get out and about, lately I find it so much easier

to

> just let him stay home and avoid any " outbursts " in public.  Any suggestions

for

> dealing with this?

>

> Anyway, just looking to hear other people's experiences and bounce things off

> the group.

>

>

>

>

>

[Guest guest]

I think this needs to go out to everyone.On Sat, Sep 18, 2010 at 11:00 AM, ROSA CANEZARO <rosacanezaro@...> wrote:

LAURIE,HAVE  ALS AND HAVE TAKING THE LDN FOR FOUR MONTHS .   I DO NO NOTICED ANY IMPROVEMENT ON ME.  AS A MATTER OF FACT MY HEALTH IS DECING.WHEN I GO TO BED I USUALLY TAKE TANGELO PM  AND LORAZAPEM BECAUSE I CAN NOT SELEEP..

ANY SUGGESTION PLEASE.  I DO NOT WANT TO DIE.I WILL APPRECIATE ANY RECOMMENDATION,ROSA  CANEZARO

[Guest guest]

Hi , Welcome to the group. My son is 13 and I don't homeschool so I can only give tell you my experience from my perspective. I give you props for homeschooling but I would get your son is some type of social skills group or therapy. The older he gets the more he will need it. I wish we had the benefit of an early diagnosis, but my son got diagnosed at 10. Now he has major problems with social skills and depression because of it. Good luck and keep us posted on your journey. :;-)ne

From: momto#1 <karen8898@...>Subject: ( ) Hi Date: Sunday, September 19, 2010, 7:31 PM

I am new to this group and wanted to say hi. I am a stay-at-home mom, and I am homeschooling my son. He had a tough time in preschool and I was worried it would get worse in K. He has finally been given an aspergers diagnosis, although I have known since he was a baby he was different. Are there any local groups for aspergers in my area of West Palm Beach, FL.? I would love to get to know some people in similar situations.Thanks,

[Guest guest]

Hi there, I'm also trying to start a support group in my area. I'm from San Diego. I wish you luck finding a group. Is it just me or is there a void out there of support groups for Aspergers when obviously there needs to be some?

Cathleen

From: momto#1 <karen8898@...> Sent: Sun, September 19, 2010 4:31:39 PMSubject: ( ) Hi

I am new to this group and wanted to say hi. I am a stay-at-home mom, and I am homeschooling my son. He had a tough time in preschool and I was worried it would get worse in K. He has finally been given an aspergers diagnosis, although I have known since he was a baby he was different. Are there any local groups for aspergers in my area of West Palm Beach, FL.? I would love to get to know some people in similar situations.Thanks,

[Guest guest]

dear

than you for your information related to fungi and bacteria.now

would you please describ the " reporter gene system " and the objective of using

reporter gene system?

sincerly

zemenu

>

> GEN news highlights: Nov 24, 2010

>

> Pfizer and SIRS-Lab Partner to Develop Fungal Sepsis MDx

>

>

>

http://www.genengnews.com/gen-news-highlights/pfizer-and-sirs-lab-partner-to-dev\

elop-fungal-sepsis-mdx/81244290/

>