New member

[Guest guest]

From: stewart2177979 <stewart2177979@...>Subject: New Member Date: Wednesday, April 22, 2009, 11:26 PM

Hello to all. My name is and I am a 43yr old white male from Lincoln, Nebraska. I am legally blind and I have spastic Cerebral Palsy. I am a Christian and am involved in prison ministry.

HI GREGORY MY NAME IS ANNA I'M 51 I HAVE SPASTIC CEREBRAL PALSY ALSO THIS A VERY GOOD GROUP I HAVE BEEN SICK THE FLU FOR A WEEK YUCK I'M VERY TIRED I JUST WANTED TO SAY HI AND WELCOME TO THE GROUPGOD BLESS ANNA amnunno

[Guest guest]

Welcome, Sounds like you have a busy life. It is always hard to find time for

your self isnt it. Well I wish you all the luck. I am a mother of 5, but they

are mostly grown now. Only one left at home. So I thought it would be a great

time to get back into shape.

[Guest guest]

Hi Foxy:

How are you doing on your weight loss and shape up plan so far?

What are your strategies and what keeps you motivated?

>

> Welcome, Sounds like you have a busy life. It is always hard to find time for

your self isnt it. Well I wish you all the luck. I am a mother of 5, but they

are mostly grown now. Only one left at home. So I thought it would be a great

time to get back into shape.

>

[Guest guest]

Hi Carol welcome to the group you will find a lot of nice folk here I have osteoporosis but so far when I fall I just get dents in my bones. I have a lot of things that are falling apart and my memory is one so welcome. may

From: funnylady2009 <funnylady2009@...>Subject: new member Date: Saturday, May 30, 2009, 5:02 PM

Hi, my name is Carol and I am a new member here. the reason I wanted to join is because I suffer from a severe form of osteoporosis as well as other medical ailments. Right now I am dealing with being housebound after suffering a compound fracture to my left leg and having a rod put in. It is a result of the osteoporosis, but there is also a funny story that goes along with it. It seems that I fell through the pavement in my driveway, but the doctor said that my leg wouldn't have broken so badly if I hadnt had the osteoporosis.thanks,Carol

[Guest guest]

Hi Carol welcome to the group you will find a lot of nice folk here I have osteoporosis but so far when I fall I just get dents in my bones. I have a lot of things that are falling apart and my memory is one so welcome. may

From: funnylady2009 <funnylady2009@...>Subject: new member Date: Saturday, May 30, 2009, 5:02 PM

Hi, my name is Carol and I am a new member here. the reason I wanted to join is because I suffer from a severe form of osteoporosis as well as other medical ailments. Right now I am dealing with being housebound after suffering a compound fracture to my left leg and having a rod put in. It is a result of the osteoporosis, but there is also a funny story that goes along with it. It seems that I fell through the pavement in my driveway, but the doctor said that my leg wouldn't have broken so badly if I hadnt had the osteoporosis.thanks,Carol

[Guest guest]

Thank you May,

Carol

From: LMay <mark9_41cupofwater@...> Sent: Saturday, May 30, 2009 9:21:26 PMSubject: Re: new member

Hi Carol welcome to the group you will find a lot of nice folk here I have osteoporosis but so far when I fall I just get dents in my bones. I have a lot of things that are falling apart and my memory is one so welcome. may

From: funnylady2009 <funnylady2009>Subject: new member@grou ps.comDate: Saturday, May 30, 2009, 5:02 PM

Hi, my name is Carol and I am a new member here. the reason I wanted to join is because I suffer from a severe form of osteoporosis as well as other medical ailments.. Right now I am dealing with being housebound after suffering a compound fracture to my left leg and having a rod put in. It is a result of the osteoporosis, but there is also a funny story that goes along with it. It seems that I fell through the pavement in my driveway, but the doctor said that my leg wouldn't have broken so badly if I hadnt had the osteoporosis.thanks,Carol

[Guest guest]

Thank you May,

Carol

From: LMay <mark9_41cupofwater@...> Sent: Saturday, May 30, 2009 9:21:26 PMSubject: Re: new member

Hi Carol welcome to the group you will find a lot of nice folk here I have osteoporosis but so far when I fall I just get dents in my bones. I have a lot of things that are falling apart and my memory is one so welcome. may

From: funnylady2009 <funnylady2009>Subject: new member@grou ps.comDate: Saturday, May 30, 2009, 5:02 PM

Hi, my name is Carol and I am a new member here. the reason I wanted to join is because I suffer from a severe form of osteoporosis as well as other medical ailments.. Right now I am dealing with being housebound after suffering a compound fracture to my left leg and having a rod put in. It is a result of the osteoporosis, but there is also a funny story that goes along with it. It seems that I fell through the pavement in my driveway, but the doctor said that my leg wouldn't have broken so badly if I hadnt had the osteoporosis.thanks,Carol

[Guest guest]

WELCOME TO THE GROUP,CAROL;; THIS IS A GROUP OF NEAT FOLKS;; HOPE YOU ENJOY IT

TAKE CARE

HUGS

DORT

From: funnylady2009 <funnylady2009@...>Subject: new member Date: Saturday, May 30, 2009, 6:02 PM

Hi, my name is Carol and I am a new member here. the reason I wanted to join is because I suffer from a severe form of osteoporosis as well as other medical ailments. Right now I am dealing with being housebound after suffering a compound fracture to my left leg and having a rod put in. It is a result of the osteoporosis, but there is also a funny story that goes along with it. It seems that I fell through the pavement in my driveway, but the doctor said that my leg wouldn't have broken so badly if I hadnt had the osteoporosis.thanks,Carol

[Guest guest]

WELCOME TO THE GROUP,CAROL;; THIS IS A GROUP OF NEAT FOLKS;; HOPE YOU ENJOY IT

TAKE CARE

HUGS

DORT

From: funnylady2009 <funnylady2009@...>Subject: new member Date: Saturday, May 30, 2009, 6:02 PM

Hi, my name is Carol and I am a new member here. the reason I wanted to join is because I suffer from a severe form of osteoporosis as well as other medical ailments. Right now I am dealing with being housebound after suffering a compound fracture to my left leg and having a rod put in. It is a result of the osteoporosis, but there is also a funny story that goes along with it. It seems that I fell through the pavement in my driveway, but the doctor said that my leg wouldn't have broken so badly if I hadnt had the osteoporosis.thanks,Carol

[Guest guest]

Welcome Miriam,

I am Anne (39). I have horrendous allergies & asthma, got to add another drug allergy yesterday... how exciting I know! Ha Ha! I also have Post Traumatic Stress from being strangled by a 13 year old child at a place I worked (June 7, 1997). I am sure there is more that I am missing but I can't remember right now.

I live in Minnesota with my husband Terry, and our daughter Montanna (will be 6 July 14th). I am a stay at home mom, but also disabled to the point that I get SS (since 1998).

I am sure you will like this group, it is a great bunch of people!!

Talk soon!

Anne

Sent: Wednesday, June 17, 2009 11:20:14 PMSubject: Fwd: NEW MEMBER

NEW MEMBER

1) Name (as you wish to be known by) Miriam2) Location (be as detailed as you want i.e. just list the country or list country/state/ suburb etc) Utah

3) Personal Info (this is about why you joined. Tell about your illness, or if you are a carer tell about that. Mention your family if you want, or your lifestyle - kids/pets etc) I was 22 when I was diagnosed with stage 2 hypertension and pkd. I have now been on blood pressure meds for 5 years. I haven't been feeling so hot lately. These are my symptoms always tired, nausea, headaches (migranes), hand tremors, feet throb, my back hurts, I also feel confused disoriented alot. I am considering taking anti depressants but would like some advice. 4) Interests (tell about your hobbies and what you enjoy) I like to read and listen to music5) Email (Say yes if you want your email address listed so others can contact you privately - or no if you do not) no6) ICQ / AOL / MSN (these are those contacts... list your numbers if you wish to be contacted via ICQ, MSN or AOL)7)

Webpage (if you have a personal webpage and would like it listed say yes and list the URL)8) Birthday (just the date and month and star sign - age is not important)

June 15

Dell Days of Deals! June 15-24 - A New Deal Everyday!-----Inline Message Follows-----

1) Name (as you wish to be known by) Miriam2) Location (be as detailed as you want i.e. just list the country or list country/state/suburb etc) Utah

3) Personal Info (this is about why you joined. Tell about your illness, or if you are a carer tell about that. Mention your family if you want, or your lifestyle - kids/pets etc) I was 22 when I was diagnosed with stage 2 hypertension and pkd. I have now been on blood pressure meds for 5 years. I haven't been feeling so hot lately. These are my symptoms always tired, nausea, headaches (migranes), hand tremors, feet throb, my back hurts, I also feel confused disoriented alot. I am considering taking anti depressants but would like some advice. 4) Interests (tell about your hobbies and what you enjoy) I like to read and listen to music5) Email (Say yes if you want your email address listed so others can contact you privately - or no if you do not) no6) ICQ / AOL / MSN (these are those contacts... list your numbers if you wish to be contacted via ICQ, MSN or AOL)7)

Webpage (if you have a personal webpage and would like it listed say yes and list the URL)8) Birthday (just the date and month and star sign - age is not important)

June 15

[Guest guest]

Welcome Adam!!!!

>

> Hello unto all as, I've just recently joined this group.Mind you I

don't have the time at this moment to do a proper introduction of sorts

but, I'll go ahead and state that I have both Asperger Syndrome as well

as Diabetes.Anyways, I'll write more tomorrow when I come back online..

>

>

> Adam

>

[Guest guest]

Hi Adam, I have diabetes that I am trying to get under control. So WELCOME to the group. may

Subject: new member Date: Thursday, June 25, 2009, 12:03 PM

Hello unto all as, I've just recently joined this group.Mind you I don't have the time at this moment to do a proper introduction of sorts but, I'll go ahead and state that I have both Asperger Syndrome as well as Diabetes.Anyways, I'll write more tomorrow when I come back online..Adam

[Guest guest]

Welcome Adam. I'm , have a multitude of problems, one being pre-diabetes and am still learning how to eat properly. My main problem is chronic pain from a very bad back, fibromyalgia, sjogrens, and too many to list. A lot of good advice here and some very much needed humor. Look forward to chatting with you. Take Care, B. in TEXASUntil one has loved an animal, part of their soul remains in darkness Sent: Thursday, June 25, 2009 12:03:11 PMSubject: new member

Hello unto all as, I've just recently joined this group.Mind you I don't have the time at this moment to do a proper introduction of sorts but, I'll go ahead and state that I have both Asperger Syndrome as well as Diabetes.Anyways, I'll write more tomorrow when I come back online..

Adam

[Guest guest]

Hi Adam,

Welcome to the group. I also have diabetes as well as occipital neuralgia. Plse feel free to share and vent, ok?

Ling

Sent: Friday, 26 June 2009 7:46:14Subject: Re: new member

Welcome Adam. I'm , have a multitude of problems, one being pre-diabetes and am still learning how to eat properly. My main problem is chronic pain from a very bad back, fibromyalgia, sjogrens, and too many to list. A lot of good advice here and some very much needed humor. Look forward to chatting with you.

Take Care,

B. in TEXASUntil one has loved an animal, part of their soul remains in darkness

From: Adam Wilder <adamwilder@isonews2 .com>@grou ps.comSent: Thursday, June 25, 2009 12:03:11 PMSubject: new member

Hello unto all as, I've just recently joined this group.Mind you I don't have the time at this moment to do a proper introduction of sorts but, I'll go ahead and state that I have both Asperger Syndrome as well as Diabetes.Anyways, I'll write more tomorrow when I come back online..Adam

New Email names for you!

Get the Email name you've always wanted on the new @ymail and @rocketmail.

Hurry before someone else does!

[Guest guest]

welcome adam

Berry

>

> Hello unto all as, I've just recently joined this group.Mind you I

don't have the time at this moment to do a proper introduction of sorts

but, I'll go ahead and state that I have both Asperger Syndrome as well

as Diabetes.Anyways, I'll write more tomorrow when I come back online..

>

>

> Adam

>

[Guest guest]

Okay now I have some time to provide a better idea of what I'm like in

regards to difficulties I face on the daily basis and all.. I've had

diabetes form #1 since 2001 when I had developed pancreatitis which,

lead into me falling into a coma.Luckily, It lasted for 8 or more

but, still after that is when it came to my attention I had diabetes

therefore, from that point on I've been trying to do my utmost best

to manage my health as best as possible.. Yes, I've made some tactical

errors along the way as, nothing is perfect yet, I keep on pressing

forwards always in a sincere,goodhearted manner..

These days, I'm trying to lose some extra mass which, I've acquired

over the last year or so, something that has not been easy yet, I don't

give up though..Basically being on the exercise bike for 30mins each days

tends to work out for me much better than going to some health club

and all..

2nd, I've also been dealing with various mental & social issues from

learning I have Asperger Syndrome--a form of autism that has made a

great amount of my life not easy however though, I don't call it

quits, simply try to find means and manners whereby, I'm able to overcome

some of my difficulties in my normal unorthodox life..I must not forget

to mention wherein; I've been dealing with Depression for 22yrs now and

one would think I'm an expert at such and not have any trouble whatsoever

yet, there have been some ups & downs throughout that time but, like

with everything else I deal with in life I'm always pushing forward

regardless.. with already 35yrs behind me so far.. ))

Adam

[Guest guest]

welcome to the group.

evelyncure cystic fibrosis

From: Adam Wilder <adamwilder@...>Subject: new member Date: Thursday, June 25, 2009, 1:03 PM

Hello unto all as, I've just recently joined this group.Mind you I don't have the time at this moment to do a proper introduction of sorts but, I'll go ahead and state that I have both Asperger Syndrome as well as Diabetes.Anyways, I'll write more tomorrow when I come back online..Adam

[Guest guest]

welcome to the group.

evelyncure cystic fibrosis

From: Adam Wilder <adamwilder@...>Subject: new member Date: Thursday, June 25, 2009, 1:03 PM

Hello unto all as, I've just recently joined this group.Mind you I don't have the time at this moment to do a proper introduction of sorts but, I'll go ahead and state that I have both Asperger Syndrome as well as Diabetes.Anyways, I'll write more tomorrow when I come back online..Adam

[Guest guest]

1) Name (as you wish to be known by) Hello my name is Elva2) Location (be as detailed as you want i.e. just list the country or list country/state/suburb etc)I'm living in California3) Personal Info (this is about why you joined. Tell about your illness, or if you are a carer tell about that. Mention your family if you want, or your lifestyle - kids/pets etc)Polio is my illness..since the age of 11 months.4) Interests (tell about your hobbies and what you enjoy) I'm an artist..pencil is my favorite media..I also enjoy the great classic movies5) Email (Say yes if you want your email address listed so others can contact you privately - or no if you do not) ..... YES6) ICQ / AOL / MSN (these are those contacts... list your numbers if you wish to be contacted via ICQ, MSN or AOL)7) Webpage (if you have a personal webpage and would like it listed say yes and list the URL)8) Birthday (just the date and month and star sign - age is not important) 19/1/*

Stay cool with this summer's hottest movies. Moviefone brings you trailers, celebrities, movie showtimes and tickets!

Summer concert season is here! Find your favorite artists on tour at TourTracker.com.

1) Name (as you wish to be known by)

Hello my name is Elva

2) Location (be as detailed as you want i.e. just list the country or list

country/state/suburb etc)

I'm living in California

3) Personal Info (this is about why you joined. Tell about your illness, or if

you are a carer tell about that. Mention your family if you want, or your

lifestyle - kids/pets etc)

Polio is my illness..since the age of 11 months.

4) Interests (tell about your hobbies and what you enjoy)

I'm an artist..pencil is my favorite media..I also enjoy the great classic movies

5) Email (Say yes if you want your email address listed so others can contact

you privately - or no if you do not) ..... YES

6) ICQ / AOL / MSN (these are those contacts... list your numbers if you wish to

be contacted via ICQ, MSN or AOL)

7) Webpage (if you have a personal webpage and would like it listed say yes and

list the URL)

8) Birthday (just the date and month and star sign - age is not important) 19/1/*

Stay cool with this summer's hottest movies. Moviefone brings you trailers, celebrities, movie showtimes and tickets!

[Guest guest]

WELCOME TO THE GROUP,ELVA;; THIS IS A GREAT GROUP OF FOLKS;

DORT FROM MICH;;

From: angelbear1129@... <angelbear1129@...>Subject: Fwd: new member Date: Wednesday, July 8, 2009, 9:17 AM

1) Name (as you wish to be known by) Hello my name is Elva2) Location (be as detailed as you want i.e. just list the country or list country/state/ suburb etc)I'm living in California3) Personal Info (this is about why you joined. Tell about your illness, or if you are a carer tell about that. Mention your family if you want, or your lifestyle - kids/pets etc)Polio is my illness..since the age of 11 months.4) Interests (tell about your hobbies and what you enjoy) I'm an artist..pencil is my favorite media..I also enjoy the great classic movies5) Email (Say yes if you want your email address listed so others can contact you privately - or no if you do not) ..... YES6) ICQ / AOL / MSN (these are those contacts... list your numbers if you wish to be contacted via ICQ, MSN or AOL)7) Webpage (if

you have a personal webpage and would like it listed say yes and list the URL)8) Birthday (just the date and month and star sign - age is not important) 19/1/*

Stay cool with this summer's hottest movies. Moviefone brings you trailers, celebrities, movie showtimes and tickets!

Summer concert season is here! Find your favorite artists on tour at TourTracker. com.

[Guest guest]

WELCOME TO THE GROUP ADAM

DORT FROM MICH

From: Adam Wilder <adamwilder@...>Subject: new member Date: Thursday, June 25, 2009, 1:03 PM

Hello unto all as, I've just recently joined this group.Mind you I don't have the time at this moment to do a proper introduction of sorts but, I'll go ahead and state that I have both Asperger Syndrome as well as Diabetes.Anyways, I'll write more tomorrow when I come back online..Adam

[Guest guest]

WELCOME TO THE GROUP ADAM

DORT FROM MICH

From: Adam Wilder <adamwilder@...>Subject: new member Date: Thursday, June 25, 2009, 1:03 PM

Hello unto all as, I've just recently joined this group.Mind you I don't have the time at this moment to do a proper introduction of sorts but, I'll go ahead and state that I have both Asperger Syndrome as well as Diabetes.Anyways, I'll write more tomorrow when I come back online..Adam

[Guest guest]

Thank you for your explanation of what " thorough " testing entails. I am SO ready

to sit in a room with 's doctor, discuss her low-normal IgA and IgG

levels, his thoughts on them and her chronic infections, and where we go from

here. I wish they would go ahead and make that appointment. I may have to

request that. I guess they just want to have all their facts together (including

insurance coverage) before we have another meeting so we know what needs to be

done next and what our " options " are.

Thanks again.

>

>

> I want to remind everyone to please remember to sign your emails. Helps to

relate to someone if we can call them by name. Also if possible please tag the

name with your childs name and diagnosis.

> I want to encourage all new members looking at starting IgG replacement to

make sure all testing has been done before infusions begin. Once infusions

begin you will not be able to get accurate tests results on your child. All

testing will be reflective of the donors antibodies. If you do not have the

full clinical picture you won't know how to treat your child. IgG replacement

is not the only thing that will need to be done and having an accurate picture

of the level of the immune deficiency will help.

> Some patients need supportive antibiotics on a daily basis. Some patients

need antifungals prophylactically. Certain patients do not mount a white cell

response or run fevers. All of this will be necessary to know to have treatment

by local physicians who may not be familiar with PID.

> PID testing should include IgG, IgA, IgM, IgE and subclass tests.

Pneumococcal antibody function testing (pre and post levels), MMR, Hib, Tetanus,

DtP and mitogen/antigen testing. THese tests will take a while to get through

but you will have a more accurate picture of your childs PID and can gage their

PID status. Also if symptoms continue after infusions begin or if new symptoms

start up you will know if your child is progressing to a new level of PID

because there was baseline testing done.

> I would also encourage from experience for there to be a baseline CT scan of

the lungs and sinuses. I know doctors are leary at exposure to radiation and

some children require sedation.

> A new diagnosis is scary and lengthy and seems to never finish fast enough.

Even 12 years into this we are testing Macey lately for a possible T-cell

problem. I'm ready to know one way or the other.

>

> Ursula Holleman

> mom to (16) and Macey (14)

> www.caringbridge.org/visit/maceyholleman

>

>

>

>

>

[Guest guest]

Ursula,

What are they doing to test Macey's T-cells?

I want to make sure we're not missing something. We've done subsets (runs low)

and mitogens/antigens (runs " no response " to candida...though she was infected

with it.)

Dani is doing well w/ SCIG and other precautions but we manage chronic GI issue

and joint pain.

Mom to dani, cvid

Sent on the Now Network™ from my Sprint® BlackBerry

new member

I want to remind everyone to please remember to sign your emails. Helps to

relate to someone if we can call them by name. Also if possible please tag the

name with your childs name and diagnosis.

I want to encourage all new members looking at starting IgG replacement to make

sure all testing has been done before infusions begin. Once infusions begin you

will not be able to get accurate tests results on your child. All testing will

be reflective of the donors antibodies. If you do not have the full clinical

picture you won't know how to treat your child. IgG replacement is not the only

thing that will need to be done and having an accurate picture of the level of

the immune deficiency will help.

Some patients need supportive antibiotics on a daily basis. Some patients need

antifungals prophylactically. Certain patients do not mount a white cell

response or run fevers. All of this will be necessary to know to have treatment

by local physicians who may not be familiar with PID.

PID testing should include IgG, IgA, IgM, IgE and subclass tests. Pneumococcal

antibody function testing (pre and post levels), MMR, Hib, Tetanus, DtP and

mitogen/antigen testing. THese tests will take a while to get through but you

will have a more accurate picture of your childs PID and can gage their PID

status. Also if symptoms continue after infusions begin or if new symptoms

start up you will know if your child is progressing to a new level of PID

because there was baseline testing done.

I would also encourage from experience for there to be a baseline CT scan of the

lungs and sinuses. I know doctors are leary at exposure to radiation and some

children require sedation.

A new diagnosis is scary and lengthy and seems to never finish fast enough.

Even 12 years into this we are testing Macey lately for a possible T-cell

problem. I'm ready to know one way or the other.

Ursula Holleman

mom to (16) and Macey (14)

www.caringbridge.org/visit/maceyholleman

[Guest guest]

>

> Hi. I have Primary Progressive Multiple Sclerosis, Asthma, Optical

> Neuritis, Arhritis in my spine, and Trigeminal neuralgia. My son has

> ADHD, ODD, CONDUCT DISORDER, POST TRAUMATIC STRESS SYNDROME and is

> mildly MR. souds fun, huh? lol

>

what are they doing for your ms i ahave 2ndary and have treid ll drugs depite

that the disease continues to ravage my bidy head to toe groew weaker every day

all extremeitied\s are they tru\ying anything new on you i have tried stem cellz

but still smoke hoping t go more naturarl anyone out there appreciate all info

deb copeland