Introduction

June 4, 2001

Hi welcome to the group.. What exactly is Fibromyagia? if you don't mind me

asking....Is your name Elspeath? )

From: Dennis & Marie McFarland

To: chronic_pain

Sent: Sunday, June 03, 2001 3:17 PM

Subject: Introduction

Hello everyone. I really hate these introductory e mails. I never know what

to say. LOL! Well, here I go anyway.

I am a 41 year old, happily married Navy spouse with a nineteen year old

stepdaughter who lives in Virginia Beach, VA with her mother. And a six year

old son of my own. I work as a receptionist for a real estate lawyers

office. And do animal rescue on the side.

I have just been officially diagnosed with Fibromyalgia and am a long time

sufferer of Chronic Fatigue, and IBS. I am also hypothyroid. A friend on

another list suggested that it might be a good idea for me to join a list

with other chronic pain sufferers. A peer group to talk to and share with.

So here I am. I look forward to hearing from all of you.

Bright Blessings,

Elspeath

June 6, 2001

Re: Introduction

Hi welcome to the group.. What exactly is Fibromyagia? if you don't mind me

asking....Is your name Elspeath? )

Hello and thank you for the welcome. What is Fibromyalgia? Well

according to one of my books it is defined as widespread muscular aching, pain,

and stiffness associated with tenderness on palpation (pressing the finger or

thumb) on specified sites called trigger (tender) points located mainly in the

neck, back and extremities. But there is much more than that to it. The syndrome

also often produces memory problems, severe sleep problems and the inability to

reach stage 4 sleep. Which is the stage of sleep which is restorative. Anxiety

is also common. And I am sure there is more I simply can't recall at the moment.

Basically it is a miserable way to live. And I am still trying to work out a

plan of treatment with my doctors. Hopefully once things are sorted out my

symptoms will be easier to cope with.

Actually Elspeath is a nickname. I prefer it to my given name.

Bright Blessings,

Elspeath

July 28, 2001

Al, ask about using MS Contin (morphine sulfate continuous), where the the

drug is in you system at a certain level always. It's time released and as in

most drug, there are low to high milligrams per pill. But, it's not addictive

if you need it. Not, do you get high. People in pain who don't get meds

actually function worse than those of us who do. Read about it. Plus, RSD is

the worst kind of pain. Look at a site called pain.com, full of stories,

advice, medication and treatment references. It's supported by drs.

Good Luck,

Kathy Goldenkranz

Aptos, CA 95003

January 31, 2002

Hi ,

I am so sorry about all of the pain and problems

you are having. The gastrointestinal problems and

arthritis , joint pain, migraine headaches are what I

am going through right now but I have been dealing

with these things for quite awhile. Finding a good

doctor and a diagnosis is your first step. It sounds

to me like you have been trying remendies that just

arn,t working. As much as I hate taking medicine , in

order to have some control I have had to take stronger

pain medication. Sometimes the right pain med can make

a big difference. Congrats on your wedding. I hope it

goes well for you. Annie

--- Ballard wrote:

> Hi my name is and I am a currently in the

> process of trying get a diagnosis for this lifelong

> saga of mine. I have been " sick " for most of my

> life

> with constant flu-like symptoms (fever, fatigue),

> psoriasis on my scalp, gastrointestinal problems,and

> chronic joint pains/stiffness (spine, hips, knees,

> wrists, elbows, ankles...pretty much all of them).

> I

> am having a really bad time this winter especially,

> with the joint pains. They are more frequent and

> to

> the point where I am having trouble walking up and

> down stairs. I have also have severe outbreaks of

> mouth ulcers (I have at least ten in my mouth at any

> given time and have had as many as 50 or more), and

> rashes that cover my legs (they are 100 times worse

> in

> the summer). I am only 22 years old and I feel like

> I'm 90. I am on a constant regimin of alleve,

> advil,

> excedrin migraine (I have constant headaches) and

> benedryl (to help me sleep at night). Only recently

> have I decided that enough is enough and I don't

> want

> to be sick anymore. I am seeing a rheumatologist at

> the end of February and in the meantime my doctor

> has

> me on prednisone. I am getting married in a week

> and

> a half and the only thing on my mind right now is

> feeling better. I'm scared that I won't be able to

> dance at my own wedding. I guess I'm just looking

> for

> a little support and maybe even some advice. Thank

> you for listening!

> Sincerely,

>

> __________________________________________________

>

January 31, 2002

--- Ballard wrote:

> Hi my name is and I am a currently in the

> process of trying get a diagnosis for this lifelong

> saga of mine.

Welcome to the group-I hope you find help and support

here I sure have in the short time that I've been a

member. Hope you have fun at your wedding and I bet

you will have good memories even if its not your best

day. I say this because my husband and I eloped to

Reno after I had been rear-ended as I wasn't going to

be able to get time off to get married like we had

wanted (a beach in Hawaii)and even though I was

wearing a cervical collar at the time and needed to

sleep/rest quite a bit-I look back and laugh at the

comedian who joked with my husband about how he needed

to be " gentle on his new bride " . Trying to have other

people help in this time before the wedding and

delegating anything that you can might help to manage

some of the pain unless of course you delegating would

just make things worse for you. Take care and congrats

on getting married and I hope you and the

rheumatologist hit it off and he/she can help!--Darcy

__________________________________________________

February 18, 2002

Welcome ,

I had the same problem. I had a doctor that I was going to who

diagnosed me with RSD, but then could not support his diagnosis to the

insurance company. His treatment helped to an extent, but I started

having pain that did not go along with RSD and he could not figure out

what it was so I had to find some other doctor. I went through 3-4

doctor's before someone believed my pain. One thought I was a drug

addict, one didn't think I had RSD; he thought I was faking just to win

some law suit. Then I found 2 doctors that finally have come to a

diagnosis of RSD on the right side and Fibromyalgia throughout. My

regular doctor never gave up on me though. That was the good thing.

Although, now I am having problems with insurance companies covering my

bills. I also have no money coming in, having to fight with SSD. It is

really complicated. I have lost most of my friends because they don't

believe the pain I am in. I also have a mother and father in-law that

don't not think I am injured and think I am taking advantage of their

son, my husband. I am not sure when it gets better.

Well, that is enough about my stuff. Welcome to the group and I hope you

find us helpful.

Stella

Introduction

Hi everyone

I am new to the list and thought I'd say hello.

I am 25 years old and live in the UK. Over the last 10

years I have gradually been diagnosed with Irritable

Bowel Syndrome, Vulvodynia and Interstitial Cystitis.

I also suffer from neck, back and facial pain and

migraines. I always knew that these must be connected

and I have just been told that I am suffering from

chronic pain syndrome, and that my neurological system

should be treated rather than the individual organs. I

have started taking Neurontin (gabapentin) and so far

haven't had bad side effects.

Does anyone on the list recognise any of this? I was

always determined to prove that I wasn't making it up

and that I wasn't going mad. It is good to have this

proper diagnosis, but it's still a mystery why I have

it.

Thanks,

__________________________________________________

June 15, 2003

In a message dated 6/15/2003 2:38:06 PM Pacific Daylight Time,

anniecaroline@... writes:

> Hello! First time with this group, first time with ANY group...lots of new

> learning everywhere. A

Hi A!

Welcome to the group! I'm so glad you're here...figuring things out...and not

figuring out the things that you don't. : )

Loveness,

*mona : )

June 15, 2003

In a message dated 6/15/2003 3:59:18 PM Pacific Daylight Time,

anniecaroline@... writes:

> Thank you for sending me a message. I hope that this will return to

> you. I wanted to try doing it one here instead of directly to

> you...still practicing...but feeling a bit more confidence than

> earlier today. You are a sweet! A

> >

June 15, 2003

> In a message dated 6/15/2003 2:38:06 PM Pacific Daylight Time,

> anniecaroline@s... writes:

>

> > Hello! First time with this group, first time with ANY

group...lots of new

> > learning everywhere. A

>

> Hi A!

>

> Welcome to the group! I'm so glad you're here...figuring things

out...and not

> figuring out the things that you don't. : )

>

> Loveness,

> *mona : )

>

Thank you for sending me a message. I hope that this will return to

you. I wanted to try doing it one here instead of directly to

you...still practicing...but feeling a bit more confidence than

earlier today. You are a sweet! A

>

November 7, 2005

Welcome Carla -

We are glad to have you and sorry to hear your story. How are you feeling now? Hope things are going better?

kas

Carla Clifton wrote:

Hello all,

I just joined the list and would like to introduce myself. My name is Carla. I am 47 yrs old, married with 2 grown children and 3 “grandsugars”. We live in a rural community northeast of Houston, Texas.

I found a lump in my throat in May 2000. I had an ultrasound that was inconclusive, then the specialist did a FNA in July. It proved to be cancer. In the two weeks from the time they did the FNA until I had surgery to remove my thyroid (they removed the entire thyroid), the lump grew so fast that it made it difficult to swallow (the cancer was eating into the muscle in my neck and out of the thyroid sack). I was given radioactive iodine several weeks (I don’t remember the exact number of weeks but it seems like it was 8 weeks) after my surgery at MD . During the wait for the radioactive iodine treatment, I gained 30 pounds (a lot for a 5’2” frame) and had no energy at all. After the iodine treatment I was put on

Synthroid.

After going every 6 months to MD and having an ultrasound of my neck, chest x-ray, blood work, and full body cat-scan, my cancer came back in September 2002 in a few lymph nodes in my neck. I had surgery to remove the cancer. This time my right vocal cord was paralyzed. My vocal cord was not cut, they just had to scrape the edge of it and it didn’t like that. My vocal cord was paralyzed half open/half closed. In January 2003, I had a stint put in my right vocal cord to push it closed. This helped to keep me from aspirating every time I swallowed anything, especially liquids. It also gave me the strength in my voice back.

I have been going to MD every 6 months since. They no longer do a full body cat-scan on me(but still do the ultrasound, blood work and chest x-ray) since it did not reveal the cancer (My doctor said my cancer was not showing up on the cat-scan. He said that was rare but he has seen that before). I have been on elevated amounts of Synthroid until this past summer when they reduced my dosage.

I look forward to getting to know everyone and learning more about this disease.

CarlaThanks!**************K.A.sFuture Independent Sales Director Kay Cosmeticswww.marykay.com/kastevens "The most valuable gift that you can give your children is not money; it is the ability to think positively." - Kay Ash

Yahoo! FareChase - Search multiple travel sites in one click.

February 15, 2006

I am a member of several thyroid message boards. On one of them a while back there was a dr from Dallas that was getting rave reviews from several board members. I will try to find him for you. I wanted to drop you a line and let you know I am searching. You might also check this boards "Files" on the main page. I believe we have a dr list.

Kim M.

aka Hyperkim Introduction

I'm from Dallas and am looking for a doctor. I've been told I have many symptoms of a thyroid disorder, so I'm trying to learn all I can before seeing a dr again. I'm looking forward to learning from all of you. With my weird list of symptoms lately I've been wondering if I'm imagining problems or just aging not so gracefully.

February 15, 2006

If you would like to be more specific about your symptoms and needs (insurance, Medicare, location) we may be able to make some more specific recommendations.pamr40 wrote: I'm from Dallas and am looking for a doctor. I've been told I have many symptoms of a thyroid disorder, so I'm trying to learn all I can before seeing a dr again. I'm looking forward to learning from all of you. With my weird list of symptoms lately I've been wondering if I'm imagining problems or just aging not so gracefully.

Yahoo! Autos. Looking for a sweet ride? Get pricing, reviews, more on new and used cars.

February 15, 2006

I'm happy to and I really appreciate any help, advice, suggestions, etc. I have Blue Cross Blue Shield of Texas and am in the Dallas area. Here are my symptoms (although I'm not sure what's related and what isn't, I suddenly feel like a hypochondriac): Fatigue even after a good nights sleep Headache almost daily Can't remember normal words...I feel like I'm in a fog at times Dry, itchy skin on arms and legs (especially at bedtime) Hair loss (seems well distributed but I sweep it up every time I dry my hair) Hair has changed from oily to very dry and brittle My freckles are becoming liver spots on my face If I don't watch my diet I can easily gain 3-4 lbs over night almost Thirsty...can't get enough to drink Constipation...if I don't take a laxative, nothing! But I've never been regular. Metal taste in my

mouth Heart races ... not always but often enough to be of concern lately Dizzy spells...again not frequent but more than I'd like I'm not usually a complainer, but this is really beginning to concern me. My mother had a goiter removed when she was about 10 yrs older than me. My father died of liver cancer and I've tested positive last year for slightly too much iron where I had always been anemic before. I just started taking Estradiol after a total hysterectomy about 15 months ago, if that matters.Jan wrote: If you would like to be more specific about your symptoms and needs (insurance, Medicare, location) we may be able to make some more specific recommendations.pamr40

wrote: I'm from Dallas and am looking for a doctor. I've been told I have many symptoms of a thyroid disorder, so I'm trying to learn all I can before seeing a dr again. I'm looking forward to learning from all of you. With my weird list of symptoms lately I've been wondering if I'm imagining problems or just aging not so gracefully. Yahoo! Autos. Looking for a sweet ride? Get pricing, reviews, & more on new and used cars.

Brings words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail.

February 15, 2006

If you are borderline hypo, starting estrogen can push you over the edge. You have all of the symptoms. Those same symptoms can also be caused by low ferritin (storage iron).. It is not unusual to have both. Has your primary care or GYN doc done any thyroid tests? If not, I would ask for TSH, Free T3, Free T4, anti-thyroid peroxidase anti-bodies, thyroglobulin antibodies, and serum ferritin. (On estrogen, the Total T3 and Total T4 tests are not valid.) Who prescribed the Estradiol for you? Eating soy can cause hypothyroidism or make it worse, if you already have it. If you have had thyroid tests done, get copies of the actual lab reports. If you want to post your results, we may be able to comment on them. If you have difficulty getting a diagnosis or adequate treatment, we will suggest a couple of docs. Pamr40 wrote: I'm happy to and I really appreciate any help, advice, suggestions, etc. I have Blue Cross Blue Shield of Texas and am in the Dallas area. Here are my symptoms (although I'm not sure what's related and what isn't, I suddenly feel like a hypochondriac): Fatigue even after a good

nights sleep Headache almost daily Can't remember normal words...I feel like I'm in a fog at times Dry, itchy skin on arms and legs (especially at bedtime) Hair loss (seems well distributed but I sweep it up every time I dry my hair) Hair has changed from oily to very dry and brittle My freckles are becoming liver spots on my face If I don't watch my diet I can easily gain 3-4 lbs over night almost Thirsty...can't get enough to drink Constipation...if I don't take a laxative, nothing! But I've never been regular. Metal taste in my mouth Heart races ... not always but often enough to be of concern lately Dizzy spells...again not frequent but more than I'd like I'm not usually a complainer, but this is really beginning to concern me. My mother had a goiter removed when she was about 10 yrs older than me. My father died of liver cancer and I've tested positive last year for slightly too much iron where I had always been anemic before. I just started taking Estradiol after a total hysterectomy about 15 months ago, if that matters.Jan wrote: If you would like to be more specific about your symptoms and needs (insurance, Medicare, location) we may be able to make some more specific recommendations.pamr40 wrote:

I'm from Dallas and am looking for a doctor. I've been told I have many symptoms of a thyroid disorder, so I'm trying to learn all I can before seeing a dr again. I'm looking forward to learning from all of you. With my weird list of symptoms lately I've been wondering if I'm imagining problems or just aging not so gracefully.

Relax. Yahoo! Mail virus scanning helps detect nasty viruses!

February 16, 2006

Thanks Jan! My dr ran some thyroid tests over a year ago (before starting the estrodial) and told me the numbers were in the acceptable range but just barely. I have an appt with a new dr (insurance changes...hate them) in two weeks so I'll ask for these tests. The estrodial was rx by my GYN when I had the hysterectomy about a year ago, but no blood tests since then. I'll watch for soy intake, too! I'll keep you posted...meanwhile I'll keep reading and educating myself. It's a little reassuring to know that maybe there's a reason for all of this and its not just in my head.Jan wrote: If you are borderline hypo, starting estrogen can push you over the edge. You have all of the symptoms. Those same symptoms can also be caused by low

ferritin (storage iron).. It is not unusual to have both. Has your primary care or GYN doc done any thyroid tests? If not, I would ask for TSH, Free T3, Free T4, anti-thyroid peroxidase anti-bodies, thyroglobulin antibodies, and serum ferritin. (On estrogen, the Total T3 and Total T4 tests are not valid.) Who prescribed the Estradiol for you? Eating soy can cause hypothyroidism or make it worse, if you already have it. If you have had thyroid tests done, get copies of the actual lab reports. If you want to post your results, we may be able to comment on them. If you have difficulty getting a diagnosis or adequate treatment, we will suggest a couple of docs. Pamr40 wrote: I'm happy to and I really appreciate any help, advice, suggestions, etc. I have Blue Cross Blue Shield of Texas and am in the Dallas area. Here are my symptoms (although I'm not sure what's related and what isn't, I suddenly feel like a hypochondriac): Fatigue even after a good nights sleep Headache almost daily Can't remember normal words...I feel like I'm in a fog at times Dry, itchy skin on arms and legs (especially at bedtime) Hair loss (seems well distributed but I sweep it up every time I dry my hair) Hair has changed from oily to very dry and brittle My freckles are becoming liver spots on my face If I don't watch my diet I can easily gain 3-4 lbs over night almost Thirsty...can't get enough to drink Constipation...if I don't take a laxative, nothing! But I've never been regular. Metal taste in my mouth Heart races ... not always but often enough to be of concern lately Dizzy spells...again not frequent but more than I'd like I'm not usually a complainer, but this is

really beginning to concern me. My mother had a goiter removed when she was about 10 yrs older than me. My father died of liver cancer and I've tested positive last year for slightly too much iron where I had always been anemic before. I just started taking Estradiol after a total hysterectomy about 15 months ago, if that matters.Jan wrote: If you would like to be more specific about your symptoms and needs (insurance, Medicare, location) we may be able to make some more specific recommendations.pamr40 wrote: I'm from Dallas and am looking for a doctor.

I've been told I have many symptoms of a thyroid disorder, so I'm trying to learn all I can before seeing a dr again. I'm looking forward to learning from all of you. With my weird list of symptoms lately I've been wondering if I'm imagining problems or just aging not so gracefully. Relax. Yahoo! Mail virus scanning helps detect nasty viruses!

Relax. Yahoo! Mail virus scanning helps detect nasty viruses!

February 28, 2006

Welcome from another Houstonian. You will find that

there are many VERY knowledgable ladies on this list

that can answer all kinds of questions. I hope you

find what you are looking for.

-Ruth

--- kathy wesselink wrote:

> Dear Members,

> My name is Kathy. I lived in Houston for 20 years.

> I have been on thyroid medication for 4 years as I

> am hyperthyroid. Unfortunately now I am battling

> with a weight gain. Lucky for me I have picked up

> some reading material and subscribed to J.

> Shoman's newletter.Thank you for allowing me to join

> your group.

> Kathy

>

> Kathy Wesselink

>

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

> Yahoo! Mail

> Use Photomail to share photos without annoying

attachments.

__________________________________________________

March 12, 2006

, I have a couple of guy friends who are hypothyroid, so you aren't

alone. They are both in their 60's and one has had it for 20 years. Both

of them struggle with weight management and muscle loss. I also live in

the Houston area.

brian_and_mary wrote:

> Hello. My name is and have been feeling overly tired and dragged

> out. My doctor ran

> blood work and says I have hypothyoidism and put me on .112 Synthroid.

> I live in the

> Houston area while surfing the internet for information on this

> disease I came upon thsi

> site and joined. For some reason, I had thought it was mainly a

> disease woman get - live

> and learn, I suppose. I don't know any men who have this disease and

> can't think of any

> buddies who ever have. I am 55. B.

>

March 12, 2006

My husband is hypo (49 now) but figures it started in college when all his hair fell out and he started gaining weight. And when ny niece was trying to pregnant and couldn't they discovered her husband (in his 30s) was hypo.Chances are you have some friends who are,they just don't know it.>> Hello. My name is and have been feeling overly tired and dragged out. My doctor ran > blood work and says I have hypothyoidism and put me on .112 Synthroid. I live in the > Houston area while surfing the internet for information on this disease I came upon thsi > site and joined. For some reason, I had thought it was mainly a disease woman get - live > and learn, I suppose. I don't know any men who have this disease and can't think of any > buddies who ever have. I am 55. B.>

March 13, 2006

Hi ,

This is all news to me. I don't " feel sick " and was wondering if I

need to take the mediciine.

Thanks,

> >

> > Hello. My name is and have been feeling overly tired and dragged

> out. My doctor ran

> > blood work and says I have hypothyoidism and put me on .112 Synthroid.

> I live in the

> > Houston area while surfing the internet for information on this

> disease I came upon thsi

> > site and joined. For some reason, I had thought it was mainly a

> disease woman get - live

> > and learn, I suppose. I don't know any men who have this disease and

> can't think of any

> > buddies who ever have. I am 55. B.

> >

>

March 14, 2006

It would be helpful if you could post your labs. And if I don't answer

bear with me. My internet at work is out and we are going out of town

on Wednesday.

> > >

> > > Hello. My name is and have been feeling overly tired and

dragged

> > out. My doctor ran

> > > blood work and says I have hypothyoidism and put me on .112

Synthroid.

> > I live in the

> > > Houston area while surfing the internet for information on this

> > disease I came upon thsi

> > > site and joined. For some reason, I had thought it was mainly a

> > disease woman get - live

> > > and learn, I suppose. I don't know any men who have this disease and

> > can't think of any

> > > buddies who ever have. I am 55. B.

> > >

> >

>

March 14, 2006

- You say you have fatigue. That is a major symptom of hypothyroidism. If you stay unmedicated, it will get worse, and you will accumulate more symptoms: muscle cramps, joint pain, high cholesterol, depression, stomach problems, feeling cold, anxiety, loss of libido. . . . You will also be more susceptible to every bug and infection that comes around. Take the pill your doc has prescribed. jan > Hi ,> > This is all news to me. I don't "feel sick" and was wondering if I> need to take the mediciine.> > Thanks,> > > > > >> > > Hello. My name is and have been feeling overly tired anddragged> > out. My doctor ran> > > blood work

and says I have hypothyoidism and put me on .112Synthroid.> > I live in the> > > Houston area while surfing the internet for information on this> > disease I came upon thsi> > > site and joined. For some reason, I had thought it was mainly a> > disease woman get - live> > > and learn, I suppose. I don't know any men who have this disease and> > can't think of any> > > buddies who ever have. I am 55. B.

Yahoo! Mail Use Photomail to share photos without annoying attachments.

March 14, 2006

Jan, you mentionned a decrease in the immune system. It seems obvious,

but could you explain exactly why that seems to be so?

Jan wrote:

You will also be more

susceptible to every bug and infection that comes around.

March 14, 2006

My theory is that men have more muscle tissue and strength and can compensate for fatigue and weakness better than women. They would be less likely to complain to a physician and no more likely than women to get the correct tests and diagnosis. M.brian_and_mary wrote: Hi ,This is all news to me. I don't "feel sick" and was wondering if Ineed to take the mediciine.Thanks,> >> > Hello. My name is and have been feeling overly tired and dragged> out. My doctor ran> > blood work and says I have hypothyoidism and put me on .112 Synthroid.> I live in the> > Houston area while surfing the internet for information on this> disease I came upon thsi> > site and joined. For some reason, I had thought it was mainly a> disease woman get - live> > and learn, I suppose. I don't know any men who have this disease and> can't think of any> > buddies who ever have. I am 55. B.> >>

January 2, 2007

Welcome !

We, Juri, Isa, Kato & Josse, wish you all a very good and healthy 2007!

Best wishes

Xxx

www.familieplanckaert.be <http://www.familieplanckaert.be/>

_____

Van: polymicrogyria [mailto:polymicrogyria ]

Namens carrie_and_kids

Verzonden: dinsdag 2 januari 2007 9:51

Aan: polymicrogyria

Onderwerp: Introduction

Hi. I'm and I have five kiddoes, the youngest of which,

Quinn, has partial lissencephaly. Dr. Dobyns should have Quinn's MRI

now--the geneticist thinks it's likely PMG and is looking for

confirmation.

Quinn will be a year old on Jan. 8. He's a happy baby,

developmentally around 5 mos. He'll start solids this week

(currently exclusively bfed). He is on Trileptal for seizures and

Prevacid for reflux. Quinn has Speech therapy twice a month, OT and

PT each weekly, vision therapy every couple of months or so. His

tone is low unless he's excited at which point he becomes fairly

rigid. He doesn't yet sit. He orients to sound and has begun to

scoot himself a little toward things he finds interesting--mirrors,

high contrast toys, sounds. He has intermittent exotropia and his

functional vision is about 20/310, so his visual input is

compromised. He loves pat-a-cake and peek-a-boo and most kinds of

music--he will " talk " to the organ at church. He doesn't often sleep

through the night--usually three hours is about as long as he goes.

His nap patterns are irregular. He's had 2 CTs, an MRI, two EEGs,

ultrasounds (and x-ray) which ruled out leaky bowel and inguinal

hernia.

I've been " lurking " for awhile and am encouraged to realize that I'm

not alone on this path. There's not much info out there unless it's

from parents (as I'm sure you all know!). My husband left when I was

just beginning the second trimester with Quinn (before the ultrasound

showed the baby's abdominal ascites and enlarged rear ventricles in

the brain). He's an MD/PhD and in the past I've relied heavily on

him for medical/health info for our older kids. The situation rather

prevents that now. I'm grateful to have found you all and look

forward to learning more from and about you.

I'm wondering what your days look like as far as therapies,

appointments, etc.? I'm pretty busy with all this (plus the older

kids)--does it slow down? Is there any such thing as " typical " with

PMG or does it depend entirely on the other diagnoses for each child?

Thanks and Happy New Year,

mom to 11yob, 9,6,4 yog and Quinn, 11 3/4 months

January 2, 2007

i am looking for anyone that lives in the eaststroudsburgh area in penn,my

maybe going to a camp there and we only have a enough money 2 weeks so any that

might be willing to put us up for week4 of us erica from maine

carrie_and_kids wrote: Hi. I'm

and I have five kiddoes, the youngest of which,