New to group

March 21, 2002

Dear Pam,

Hi! And welcome to the group. I, too, am rather new, but have found

there are many extremely knowledgable members in this group, and the

moderators are wonderful! (In my opinion!)

I hope you find the support and the answers to your questions, you

are looking for. I feel confident that you will.

Although there are many members who suffer horribly from neurological

disorders, so far, I seem to be the only one, that I know of, who has

the diagnosis of Central Pain, due to Traumatic Brain Injury. (I say

this, only as an introduction of myself, to you.) I also suffer from

Fybromyalgia, Chronic Fatigue, Post Traumatic Stress Disorder, Disc

Disease and so on and so forth...

Anyway, when I first came into the group another member welcomed me

warmly, and I appreciated it so much, so wanted to do the same for

you.

Most Sincerely,

joan (bat-gil)

June 26, 2007

Happy days to everyone!

My name is Darlena and I just joined the group. I can definitely relate to this

topic!

I have FMS, CFS, Sleep Apnea, Chondramalcia in both knee's and a bunch of other

related stuff.

I have always been a very positive person, but when I don't feel good, I just

want to be left alone. Lately things have been escalating.

I had a workers comp injury in 12/06, tripped over a box and tore my ACL in my L

knee. Also jerked my entire body and aggrivated my Fibro. I was put on work

restrictions and got nothing but grief from my mgr and coworkers. I had surgery

on 4/5, was out for 3 wks, went back and after 2 wks, quit. I couldn't take the

harrassment and everyone talking about me behind my back and to my face anymore

about how slow I was. About the same time I went back, my R foot started hurting

and they said I have a bone spur. Hello - I could hardly walk. This was a very

large primary care doctors office, part of a major healthcare system here. You'd

think they'd get my health issue's. My own doctor was there and he didn't get

it. The thing I miss the most is the free samples and not having to pay my

co-pay. I transfered back to my old PCP after I left. He is within the same

system, just at a different facility.

My mother died 3/4, very unexpectedly, after just 2 weeks of finding out she had

cancer. About an hour after she died, my brother went on a tirad at me. My SIL

and sister are totally ignoring him and me. He blocked me in on the side of the

bed where the window is. This was all in Atlanta, I live in FL. I had taken a 2

wk leave of absence. When he finished, I got a cart, gathered all my stuff and

tried to leave. By then my sister was begging me not to leave this way, my SIL

was screaming at me, my dtr, who hadn't been in the room and didn't know what

had happened was begging me not to go. But I was not going to be subjected to

anymore of his behavior. We'd always been close and him doing this was almost as

bad as loosing my mom. He then parked his truck behind my car to stop me from

leaving. But I had been prepared and already called the police. He got very

upset when the officer made him move his truck and I left. I spent most of week

at a friends house up there, who then

drove home with me.

I used to work death claims at a life insurance company and I understand that

people grieve in very different ways. I've heard some real horror stories. I

always said I would walk away from anything like that and I did. However, I

never expected it from my brother. Sadly, we haven't spoken since. My mother had

certain wishes that prevented us from having a service, so we really haven't had

any closure.

I have been looking for a job for over 5 weeks now. I wish I could stay home,

but we can't afford it. We are already feeling the crunch. My husband goes back

and forth on my staying home. He is the one person who, if doesn't totally

understand all of it, at least knows I'm not faking any of it. I am truly

blessed to have him in my life.

On 5/31, I got married for the first time, at 43! My hsb's 2nd. We have been

together almost 3 yrs.

I have been feeling worse and worse, getting migraines almost every day. I am

soooo tired, I fall asleep at the drop of a hat. We have laptops and are

wireless in the house, so I can lay on the couch and be on the internet. I seem

to be more comfortable on the couch than in the bed. I can't tell you how many

times my husband has found me in the middle of something, asleep. He accusses me

of not wanting to sleep with him (lol). Between my knees and my foot, it makes

it almost impossible to get out walk or do any exercise. Because I knew my

insurance was running out, I tried to get all my doctor appts out of the way. I

had my annual pap and she did bloodwork that said I was in menopause (yuk) and

my TSH level was twice what it should be. I have Hypothyroidism and it was just

checked in March for my pre-op. My PCP was very surprised at this. He adjusted

my Synthroid about a month ago, I don't feel anything yet. I'm in pain almost

all of the time. I don't know what I'd do

without my pain medicine. OTC stuff doesn't touch me. In 1989, I had a complete

illeostomy due to Crohns Disease, so my absorbtion rate is very poor.

Well, now you have most of my history. Sorry for rambling on, but thanks for

listening!

Darlena in ville, FL

June 28, 2007

-OMG, to think I almost missed this thread because my email sends me

what they feel are the " important " ones. lmao!! No offence Alliance

but you got this one wrong lol

Well yah see, dis is how I did it. I got the vest for my small furby

with the patches you sew on that say " I " m working, don't play with

me " and let me tell yah..........I TAKE THE BLOODY PUP EVERYWHERE

WITH ME! If anyone questions it, all you have to do is tell them to

call ADA or American Disibilities Association or summit like dat and

Poof! Yer in like flynn! To be honest though, he has two lil

pockets on his vest, one to hold my cigs and the other for a lighter,

now if I fall say.....I'm down at his level and can just..lite up!

ROFL!

Being an equal opportunity kinda gal, where do I find small suites

for my parrot? *scratchin head, thinking what I can put in those

pockets!*

Oh do tell me more on that-- stipends. I haven't the foggiest idea

what that is.

Not long ago (before this DD) I bread Labrador Retrievers, Blacks and

yellows mainly with chocs once in a while. I donated one of the

litter to local police department on list and two to the seeing eye

foundation. Now, I need help and can't find a full bread poodle to

train! Even in shelters, they want minimal fee of 400.00 to start!

I say poodle because my friend that also has ME/Fibro has recently

gotten " johnathan " she got him trained so quickly and goes

everywhere she does. He's all work though and loves it! She told me

if I was open to the idea of bigger dog for assist (I could crush my

furbaby with one fall) that a standard poodle is what I want to find.

Really good hearing from you! I miss your helarious posts! I got my

laugh for the day...ty!

Huggz,

In CFAlliance , " ferynnghee " wrote:

>

> Hi all, and especially YOU Dutchie/ of Parrot and pup,

> SO glad to hear from you, and that you are working in this way

with

> your dog! Here we have a myriad of problems due to laws about where

> dogs are/ are not allowed. Dogs for the blind, ofcourse, can go

> anywhere but notso with others unless they are being trained. If

they

> are being trained (and only by someone with special certification

> here) they must wear a tag. The laws vary, but one good thing is

> this; if laws and your situation is such, you CAN get stipends to

> help with costs for your pet -oops!- I mean Assist Dog.

> Mine is really more of a scare-off-the-bad-guys dog. An absolute

best

> friend, completely non judgemental, and incredibly devoted. Also,

> nobody's fool (That is the black mouth cur dog part!). It varies as

> to breed, I think. With law enforcement a guy once told me they have

> golden retreivers sometimes,and there are goldens who are

> sweethearts,but complete airheads when it comes towhat that job

needs.

> They also have some which are super sharp. I think that you can

even,

> in some cases, just get a young (hopefully) shelter dog,or perhaps a

> shelter dog who was a pet but had to be given up for some viable

> reason (i.e. the dog is housebroken; judged by the shelter not to

> have bad habits). Here at our ASPCA they do evaluations of all their

> dogs before putting them up for adoption; the older dogs are less

> likely to be a surprise than the mix breed pups. Then again, you

> might just want to go to a breeder. I am just a sucker for shelter

> dogs and push that when I can; those dogs KNOW you saved their life,

> and they are grateful!

> Online you can find out most anything on asssistance dog by state,

> town, and even get help with training! Thanks!! Love from Jane, one

> with the hound and love from the hound as well!!

> >

> > Hi Jane! Miss talkin to you girl!!!

> > You bring up a very good point and I'd like to add to it just a

tad.

> > I have started training my shitizu as an assist dog. He is all of

> >16> lbs but I have to tell you what happend. I was attempting to

> >kill> two birds with one stone one day (was having a good day) so I

> >decided> to skip the coffee and take him outside while at the same

> >time, walk> to the end of my street to the postal office. (no

> >mailmans here..just> boxes at office)

>

March 31, 2010

Crystal

I'm familiar with the impulse control. Frustrating isn't it??!!!!

Sent from my iPhone

Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks

to a new much better quality MRI. The first one was taken at 6 months old and

at that time I was told he had SOD (Septo Optic Dysplasia), and that he was

completely blind, which he isn't, but that was all. Now, I am told that in

addition to the SOD, he has diffuse PMG pretty much covering most of his brain,

Lobar Holoprosencephaly, Heterotopic Subcortical Gray Matter (almost unheard of

in boys), and because that's not enough, he also has a cyst located inside his

brain that is getting huge and causing problems and must be removed.

The MRI was performed on 2/16/10 but because this was " one of the most

complicated MRI's Stanford has ever seen " , they took it to a Neuro-Radiology

conference to get everyone's opinion on it. So I didn't get the news until

3/2/10. I'm still waiting to meet with the Neurosurgeon and Neurologist

(Stanford) and we don't have an appointment until 4/8/10. I haven't slept in

months now. I have so many unanswered questions and worries.

In the meantime, he hasn't had any hormone issues, walks or runs everywhere, and

while speech delayed he's catching up and never stops talking. He also has been

diagnosed with ADHD and has some fairly significant impulse control issues. He

has never had any " visible " seizures that I am aware of, but now I'm wondering

about Nocturnal seizures and I'm thinking that he's having them and I just

didn't know what to look for. I'm also very curious about the " Invisible "

seizures I've been reading about. That really scares me and could explain some

of his behaviors. Oh, and no drooling since he finally stopped teething.

Any information any of you have to share would be most welcome. I'm feeling

pretty alone in this right now. My fiance refuses to acknowledge the extent of

the issues found and won't share in any of the research I've done.

Thanks,

Crystal and Caiden

Redding, CA

March 31, 2010

Up until two weeks ago when I joined this group I too felt alone. Glad to have

you and we will help however we can.

>

> Subject: New to group

> To: polymicrogyria

> Date: Wednesday, March 31, 2010, 6:53 PM

>

> Â

>

> Hi, my name is Crystal and my son Caiden, 3, was

> just diagnosed with PMG thanks to a new much better quality

> MRI.Â The first one was taken at 6 months old and at that

> time I was told he had SOD (Septo Optic Dysplasia), and that

> he was completely blind, which he isn't, but that was

> all.Â Now, I am told that in addition to the SOD, he has

> diffuse PMG pretty much covering most of his brain, Lobar

> Holoprosencephaly, Heterotopic Subcortical Gray Matter

> (almost unheard of in boys), and because that's not

> enough, he also has a cyst located inside his brain that is

> getting huge and causing problems and must be removed.

>

> The MRI was performed on 2/16/10 but because this was

> " one of the most complicated MRI's Stanford has

> ever seen " , they took it to a Neuro-Radiology

> conference to get everyone's opinion on it.Â So I

> didn't get the newsÂ until 3/2/10.Â I'm still

> waiting to meet with the Neurosurgeon and Neurologist

> (Stanford) and we don't have an appointment until

> 4/8/10.Â I haven't slept in months now.Â I have so

> many unanswered questions and worries.Â

>

> In the meantime, he hasn't had any hormone issues,

> walks or runs everywhere, and while speech delayed he's

> catching up and never stops talking.Â He also has been

> diagnosed with ADHD and has some fairly significant impulse

> control issues.Â He has never had any " visible "

> seizures that I am aware of, but now I'm wondering about

> Nocturnal seizures and I'm thinking that he's having

> them and I just didn't know what to look for.Â I'm

> also very curious about the " Invisible " seizures

> I've been reading about.Â That really scares me and

> could explain some of his behaviors.Â Oh, and no drooling

> since he finally stopped teething.

>

> Any information any of you have to share would be most

> welcome.Â I'm feeling pretty alone in this right now.Â

> My fiance refuses to acknowledge the extent of the issues

> found and won't share in any of the research I've

> done.

>

> Thanks,

>

> Crystal and Caiden

>

> Redding, CA

>

March 31, 2010

Hi Cristal,

Some few words just to say I know exactly how you feel... hard for someone out

of this particular problem to know.

Our kids are the best we have in live and we have to be strong just for them, we

are their support!

I'm grandmom of a 4 years marvellous litle girl, with slight PMG on right.

We were told in Minneapolis/MN she wouldn't walk nor talk and now she's walking,

running, she goes to ballet lessons

(of course she can't perform the dance, but she tries and she loves it), she

swimms and she goes to equitation.

He have been trying everything we can, in order to stimulate her, and we had

good results.

Every alternative treatment have been made, we try EVERYTHING, with no

restrictions, as Chi-Kun, Reiki, Light

Frequencies, homeapy, Orthomolecular, and so on, so on.... doctors, as a matter

of fact, doesn't know what to exactly

do, and here in Brazil most of them didn't even heard about, so parents have

decided to BELIEVE she is good, she is

great and she is improving, she understands everything, she drools, but less

than before, and she only talks some very

few words, she goes to pre-school and she interacts with litle friends.

If Caiden is feeling good as you say, running, talking and interacting, you must

feel in your heart what is better for him...

hard to decide, I know, but when I read some posts here, I feel greatfull for my

granddaugther not being on prescription

and going on as a perfect little girl! Now, waiting her to improve talking in

her own rythum, not ours!

Wellcome to group, youe'll have support here and get your time, in order to

decide the best for both of you.

A hug.

a

To: polymicrogyria

From: rpangalangan@...

Date: Wed, 31 Mar 2010 12:56:56 -0700

Subject: Re: New to group

Up until two weeks ago when I joined this group I too felt alone. Glad to have

you and we will help however we can.

>

> Subject: New to group

> To: polymicrogyria

> Date: Wednesday, March 31, 2010, 6:53 PM

>

> Hi, my name is Crystal and my son Caiden, 3, was

> just diagnosed with PMG thanks to a new much better quality

> MRI. The first one was taken at 6 months old and at that

> time I was told he had SOD (Septo Optic Dysplasia), and that

> he was completely blind, which he isn't, but that was

> all. Now, I am told that in addition to the SOD, he has

> diffuse PMG pretty much covering most of his brain, Lobar

> Holoprosencephaly, Heterotopic Subcortical Gray Matter

> (almost unheard of in boys), and because that's not

> enough, he also has a cyst located inside his brain that is

> getting huge and causing problems and must be removed.

>

> The MRI was performed on 2/16/10 but because this was

> " one of the most complicated MRI's Stanford has

> ever seen " , they took it to a Neuro-Radiology

> conference to get everyone's opinion on it. So I

> didn't get the news until 3/2/10. I'm still

> waiting to meet with the Neurosurgeon and Neurologist

> (Stanford) and we don't have an appointment until

> 4/8/10. I haven't slept in months now. I have so

> many unanswered questions and worries.

>

> In the meantime, he hasn't had any hormone issues,

> walks or runs everywhere, and while speech delayed he's

> catching up and never stops talking. He also has been

> diagnosed with ADHD and has some fairly significant impulse

> control issues. He has never had any " visible "

> seizures that I am aware of, but now I'm wondering about

> Nocturnal seizures and I'm thinking that he's having

> them and I just didn't know what to look for. I'm

> also very curious about the " Invisible " seizures

> I've been reading about. That really scares me and

> could explain some of his behaviors. Oh, and no drooling

> since he finally stopped teething.

>

> Any information any of you have to share would be most

> welcome. I'm feeling pretty alone in this right now.

> My fiance refuses to acknowledge the extent of the issues

> found and won't share in any of the research I've

> done.

>

> Thanks,

>

> Crystal and Caiden

>

> Redding, CA

>

May 4, 2010

Sorry, I haven't been on in a while, but this really caught my eye!Â We just

got back from the GI doctor, and weighs on 47 pounds and has maintained

that for a year.Â I was grilled on how much she ate, etc.Â And yes, we have to

buy Pediasure, and man, it is killing me!Â But we do it for our babies,

right?Â She eats, and runs around a lot (hyper), so I am thinking she burns it

off, but still she is underweight and small.Â She is 7 and 48 inches tall.Â

She could live off Pediasure as it is so much easier for her to deal with rather

than the hard work of chewing and eating!Â A dietician called me and told me to

make her smoothies (already do) but to add olive oil in it.Â I am going to try

that.Â Bridget

________________________________

To: polymicrogyria

Sent: Mon, April 12, 2010 2:00:20 PM

Subject: RE: New to group

Â

Correction on my e-mail, Cristina is 4 and weighs a whopping 25 pounds, not

35.Â She has been to an endocrinologist.Â She sent me to a dietician.Â She

recommendexd pediasure in between feedings.Â I now spend about $40.00 per week

in pediasure.Â You would think since she doesn't walk or move a lot that she

would gaon weight.Â She has only gained 5 pounds in 2 years.

From: Chelsea Thornton <chelsea49509@ hotmail.com>

Subject: RE: New to group

To: polymicrogyria@ yahoogroups. com

Date: Wednesday, April 7, 2010, 11:50 PM

Hello Crystal,

I'm so sorry that your fiancee is acting that way about your son's diagnosis. My

daughter was diagnosed at 2 days old and is now 16 months, her father is still

having trouble coping. I am here for support if you need it. If you would like,

you can call me. Just let me know and I will give you my number. So sorry to

here that you are feeling alone, but as Bridget said, we are all here for you.

To: polymicrogyria@ yahoogroups. com

From: lodge.bridget@ yahoo.com

Date: Mon, 5 Apr 2010 16:08:30 -0700

Subject: Re: New to group

Crystal, welcome! I can sympathize with you, as my husband wants nothing to do

with my daughter's diagnosis or doctor appointments, so the weight of it all

falls one me. So, I am with you on that one!!

I am so glad you did get a definitive diagnosis... but yes, there are always

tons of questions!! Hang in there and just love him. The worries won't stop, but

you will become stronger in dealing with all the issues.

We are all here for you.

Bridget

____________ _________ _________ __

From: Crystal Bates <cdb1009sbcglobal (DOT) net>

To: polymicrogyria@ yahoogroups. com

Sent: Wed, March 31, 2010 11:53:15 AM

Subject: New to group

Hi, my name is Crystal and my son Caiden, 3, was just diagnosed with PMG thanks

to a new much better quality MRI. The first one was taken at 6 months old and at

that time I was told he had SOD (Septo Optic Dysplasia), and that he was