New To Group

July 5, 2002

Hello Terry and welcome to our group, you posted properly, we see

your message Sorry for the pain that has brought you here, but

glad you arrived. I don't have the conditions you speak of but I do

have pain and take medication for relief and grateful to have that

relief. I hope to see you post more in the future. Have a good

weekend,

May 22, 2007

Hi all, and welcome to you!!

I know a little bit about myofacial and I know it is so terribly

painful; I'm so sorry you have that and fibro as well. One thing here

is this. There is hope. I did go through some very bad years; there

were the years before I was properly diagnosed and sought diagnosis but

no one knew what all the symptoms were. And I felt pain, my legs,

especially my knees becoming weaker, hurting... Then the emotional,

however as I already HAD some emotional problems (in therapy and seeing

a psychiatrist for PTSD, major depression and anxiety). I began getting

new ones (fits sort of, or these mood swings to being in a really BAD

mood). I then got serious --or more serious-- headaches after 9/11. I

found I did and still DO go through periods of fear. Even on medication

I do. BUT I am so BLESSED as to have a wonderful doctor (Dr

Enlander, N.Y., N.Y.; www.enlander.com). His treatments --since 12-02--

have greatly improved things for me. YOU are doing something so

powerful and positive for yourself! You are here online and striving to

learn as much as you can. THAT is the best thing; taking the

steps,doing the foot work we need to do in order to reach our goal; to

improve our condiction as much as we can.

One thing I have and MIGHT be a positive (this depends how you feel

about this) for you is a dog. I do not know HOW I'd keep my sanity -

what little I have,lolol!- without the lil pup. (Actually he's 90 lbs

of pup and he is protection, he never turns up his nose at my cooking,

he always has a look of interest when I talk to him.) Most important he

makes me get out of the house whether I want to or not. Some people on

this board have cats, and a couple of my favorite people have parrots!

The thing with either of those kinds of pets is never having to walk

them; the parrot is an especially engaging and wonderful pet if you are

able to get the right kind of sociable guy (or girl). But the dog helps

me socialize; wego to the park and have a number of dog friends. Some

of their owners even know all about this illness I was suprised to

discover!

I hope that you are able to get a bit of hope from my message, and feel

free to write should you care to. There is a great and caring community

of people here from all over!

Love, Jane, the one with the hound

>>

>Hi gang,

> I was diagnosed with FM with myofacial tendencies about a year and a

> half ago. I have a list a mile long of all the symptoms and emotions

> which I'm sure most of you are familiar with. Lately I have been

>down > right scared.

> I have come here to learn from you all and try to learn what you do

>to > help yourself and see if I can find something that would work for

>me.

> " mynylaina "

May 23, 2007

Hi Jane and , well I got my lil dog Seven to train this way, they use

this breed (Papillion) as disability aides a lot, though @ 7 lbs no heavy

labour! But he is very smart and alert, I'd like some resources as to how to

train him appropriately and what kind of things you can train them to do.

Aylwin xo

May 24, 2007

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)

May 25, 2007

I would like to check this out too. On training a dog. Roxanne

June 28, 2007

Welcome to the group Darlena

I'm so sorry to hear of all your dealing with and will keep you in my

prayers. One thing ocurred to me though about your " staying home " .

You really need to decide that yourself, yes discussing with dh is a

good thing but ultimately it is your decision. Make sure when your

sharing this with him that he knows it is your decision. If and when

you do decide you cannot work with any regularity, make sure you

apply right away for disability. Unlike myself, I did not know by

denying my disability while I tried and tried to work that 5 yrs had

passed and by the time I applied, I got bottom amount for disability

through the state. They basically use a point system in which they

grade the jobs you have worked and for how long to determine your

amount you get monthly and it goes up from there.

I am so sorry for your loss, my brother died the very same way, rare

stomach cancer before he was 42 and died 2 weeks from diagnosis. You

have been stressed to the max and that plays alot into how you will

feel in the future. I find stress makes my illnesses worse after the

adrinalin or whatever carried me through it dies down.

So you dont feel alone here, I have ME/Fibro, degenerative bone

disease since late 20's, sleep apnea and narcolepsy. I cannot

imagine you going on without meds and living with what you are

physically. I do know most recently, it is possible to get

Disibility through Social Security after first letter of denial if

you get a Attorney to take from then on. My friend who sufferes with

many things as I do had a judge decide it for her and her attorney

just called after the first denial letter and told her it went

through! That is amazing as it has taken most of us at least 2yrs to

get anything. Perhaps Social Security are seeing more of us now and

don't make you wait so long.

Seems I've rambled on now! Just know your in the right place and we

do bounce issues off each other for answers or just justification of

how we feel about things. There is a stream of information and links

added by the Alliance that keeps us up to date on the most important

things going on things that effects us most.

God Bless and get some REST! I am curious when you were diagnosed

and is there a chance of your being able to reverse your CFS (much I

have read indicates you can have full reversal if you are DX early

enough)

>

July 3, 2007

Hi Darlena,

I'm happy for you that you got the job but do take care of yourself for

sure. Moving is a huge job and lots of stress even if you want to move,

and starting a new job is also way high a stressor. And you will be

doing both. What will you be doing at your new job? I lost my job over

3 years ago and it was really hard to have to downsize and live on

disability. It is still hard and I still hate not being able to work

and socialize with folks at work etc.

Sandrea

July 6, 2007

-Welcome back Alywin!

I thought a " Cat " got your tongue! I did miss you, honestly!

I know what you mean about Dogs and breeds. I used to breed labs of

all colors. Both parents were very calm and yet smart. I have kept

track of all puppies until I got this DD. At the last check, I found

everyone to be very happy with their purchases from me and one word

that was used the most was " smart " ! I always had the pups potty

trained before leaving and the average time was at 4 weeks of age.

I recently found out that If I want to adopt a rescued Standard Poodle,

they won't let me keep my dear " Gizmo " and that is just out of the

question! I asked why and they said because if you have any other

dogs, you might not treat the new dog with all the attention they

need. BAH! Bool-sheet!

Anyway, I am still deflating here lol. I got stuck for a week

battleing the 240lbs from 275 and just yesterday broke that and am

streaming down pretty quickly! I have a neurologist appointment next

week that Im sure will take me on yet another adventure.

My 4th was very quiet as usual but hope yours was one big party!

Fireworks and all!

Huggz hun and I really missed yah, glad to see your back to take over

the helm!

-- In CFAlliance , " Aylwin " wrote:

>

> Hi .I'm Baaack! Missed you & all with email blackout for

awhile. Well

> I have met standard poodles who are totally skitty, golden labs who

are dumb

> as posts or very smart, and so on. I think it is more the temperament

of the

> dog and how you want it to help you than the breed IMHO. Then, I too

am a

> big fan of mix breed/rescue dogs. Who knew I'd end up with a purebred

> Papillion LOL! He did need a home, and I just needed a dog that

didn't need

> much exercise! We (Ruby my other dog) and I just adore him - that's

the most

> important thing. Aylwin xox

>

July 8, 2007

Thanks Sweetie, this particular Plague of Job seems to be on the

wane.my falling seems to be more of a tripping, slipping kinda thing.maybe

just nothing real. We'll see! but there go my brains too LOL! Sending hugs,

Aylwin xox

July 10, 2007

-Well Alywin,

You want to watch that. I called that phase " drop foot " , now I just

fall

-- In CFAlliance , " Aylwin " wrote:

>

> Thanks Sweetie, this particular Plague of Job seems to be on

the

> wane.my falling seems to be more of a tripping, slipping kinda

thing.maybe

> just nothing real. We'll see! but there go my brains too LOL! Sending

hugs,

> Aylwin xox

July 10, 2007

Gee Thanks that's sooooo reassuring! LMAO! Honestly if I wear my

Blunnies which cling to anything I seem to be all right - for now

anyways.hotter'n blazes here now, ants keep crawling on me <sigh> . Don't

fall down now! Aylwin xox

-Well Alywin,

You want to watch that. I called that phase " drop foot " , now I just

fall

July 11, 2007

Dropping a toe or foot is a neurological sing my neurologist said i

should watch out for. Please talk to your doctor if this is happening

to you.

Love ya!

Big Gentle Huggles from SE PA,

Di )

wrote:

> -Well Alywin,

>

> You want to watch that. I called that phase " drop foot " , now I just

> fall

>

> -- In CFAlliance , " Aylwin " wrote:

>

>> Thanks Sweetie, this particular Plague of Job seems to be on the

wane.my falling seems to be more of a tripping, slipping kinda thing.maybe just

nothing real. We'll see! but there go my brains too LOL! Sending hugs,

>>

>> Aylwin xox

November 10, 2007

Hi all,

My name is , I'm 48 and have been dealing with multiple health

issues for years but always led an active life until about 4 years ago.

I used to work at our local humane society and during that time had to

undergo the post-exposure rabies series after being bitten. I quit

working there several months later due to the strenuous work and my

lack of energy (just thought that I was getting too old for that kind

of work) About 6 months to a year later I developed chronic urticaria

(hives and angio), anti-thyroid autoantibodies, high blood pressure and

chronic pain. Since then I have gone to the Mayo Clinic in ville

FL along with allergists and a rheumy (My GP told me that if he were me

he'd have tracked down a witch doctor if he thought it would help).

I take AM:Zantac 150mg,Synthroid 200msg,Allegra 180mg, & DynaCirc CR 5mg

PM:Zantac 150mg,Singulair 10mg,Mobic 15mg,Klonopin .5mg, & Zanaflex 4mg

Emergency meds include Pred,zyrtec,doxopin and atarax.

I currently stay at home and am a volunteer puppy raiser of seeing eye

dogs. I have a loving and supportive husband and he and the dogs don't

care if I'm in me PJs till noon. I look forward to learning all I can

and providing and receiving support.

Take Care,

November 11, 2007

Welcome ! Wow, it sounds like you have dealt with a lot…I’ve also been

through the hives/angio/anaphylactic fun…(I have ME) it does sound like the

rabies vaccs may have upset the apple cart in your immune system….I know

Rabies is a must-have but you know these kinds of problems are not uncommon

(post-vaccination immune meltdown)…sounds like your love of critters has

carried over though, how lovely to raise pups! You are among many animal

lovers here…TC Aylwin

November 12, 2007

Welcome to the group . I am Sandrea, am 44, and haven't working in

3 years or so due to CFS and then Fibro. I also have a long history of

depression and no thyroid due to thyroid cancer. I had repetitive

stress injuries to both hands and elbows and my fibro seems to have

settled mostly in those areas. In any case, I am a dog lover too, I

have three dogs and three cats. I know that a lot can develop after

stress of any kind, physical or emotional or spiritual. So, it is no

wonder if following the rabies vaccinations you developed other health

problems. I'm glad to hear that your husband is supportive as that

makes the world of difference I think. I am single and live alone and

do some respite work taking care of folks with mental retardation. I am

hoping to take care of someone on a full time basis as that would be

company for me and also a good source of income. Living on disability

is no fun at all. Anyway, I'm glad you joined the group. Everyone is

very caring and we try to be supportive of one another and answer all

the questions we can.

Sandrea

August 24, 2009

Tina,

I was quite nervous because the hospital called twice on Friday and left no

messages. So I tried to stay positive over the weekend but that voice in my

head kept saying " they had to of found something wrong!! " . Here it is Monday, I

have called neuro and the pediatrician and the results arent in yet. Phew! I

am still not sure why they called. Thank you for thinking of us.

TJ has an appt with neuro the beginning of September. I dont know if they will

discuss the findings then or they will discuss them with me sooner.

We met with his Service Coordinator to set up a speech program. Because many

PMG kids benefit from signing, I said I am interested in a TOTAL COMMUNICATION

program, not just speech. I worked as an interpreter for the deaf for years so

I think sign may be TJs main form of communication.

Best of Luck w the upcoming MRI, keep in touch!!

From: ellenwingate <ellenwingate@ <mailto:ellenwingat e%40yahoo. com>

yahoo.com>

Subject: New to group

To: polymicrogyria@ <mailto:polymicrogy ria%40yahoogroup s.com>

yahoogroups. com

Date: Wednesday, August 19, 2009, 7:21 PM

Hello everyone!

Our 4 month old was just diagnosed with PMG and I was thrilled to find a

group of people who have gone through or are going through the same thing.

However, I hate that child has to go through anything like this.

We live in South Carolina, so I was wondering if anyone else in the group

was in this area.

Thanks!

Ellen Wingate

August 25, 2009

,

You are so smart to be thinking " total communication " for your son. All

children benefit from having multiple ways to communicate. I would also

encourage you (if you haven't already) to consider AAC (alternative and

augmentative communication) as a part of the total communication package. Many

of our children benefit from having this in their repertoire of communication

modes. They can still sign, still vocalize and make verbal approximations and

have a " voice " that they can use when those they are communicating with either

don't understand sign language (which is more often then not once they get

older/school/etc.) or if the communication partner doesn't understand their

verbalizations/approximations.

Many times uneducated SLPs will advise that it is " too early " to have AAC as a

part of the repertoire (even low-tech picture cards), but it is never too early.

In fact, research shows that it only helps with both expressive and receptive

language development.

Thanks for letting me add to your thread. I feel passionate about including AAC

for our children and feel that any time I can put in a plug- I need to take the

opportunity ;-)

We will continue to think positive thoughts for TJ!! Please keep us posted.

The waiting is the hardest part.

Best,

Krista

September 7, 2009

Hi Tina

I too had a normal pregnancy and c-section birth for my second daughter. All

was fine, but at 2 mos. of age I started to notice that my daughter would not

turn her head to the right and whenever she reached for a toy, etc. she only

used her left hand. Her right had was always completely, tightly fisted. On

her normal well baby visits to the pediatrician she always did fine and when I

voiced my concerns I was told everything seemed fine. I knew that something was

not quite right so I called Early Intervention. They came out and evaluated my

daughter and she qualified for OT and PT due to a developmental delay. Over the

months the PT and OT asked me if I was planning on looking into what may have

caused the dev. delay. I had an MRI scheduled and made an appointment to see a

neurologist. We saw the neurologist before the MRI and he took one look at her

and said that she had a stroke in utero. He said that the MRI would not be

necessary

since we had her in therapy and she was making good progress. Well, being who

I am, I went ahead with the MRI and it was found that she had too much gyri on

the left side of the brain and there was decreased white matter. So she was

diagnosed with PMG. She is an amazing little girl with a lot of drive. She

works so hard at everything she does. She walked at 15 months and hasn't

stopped since. She too was diagnosed with cerebral palsy and has a right sided

hemiparesis. She just turned 3 and is such a spit fire. In July while

vacationing in NH she began having focal seizures, another bump in the road. We

had her seen quickly and she has started Trileptal and has not had a seizure

since beginning the med. The seizures are hard to watch and I prayed they would

never come, but they did and it was just another glitch to work through. Please

keep your hopes up and never, ever doubt your motherly instincts! Continue to

encourage your son

and he will amaze you every day!

Please keep in touch and don't hesitate to ask me anything.

Stay strong!

Traci

From: ellenwingate <ellenwingate@ <mailto:ellenwingat e%40yahoo. com>

yahoo.com>

Subject: New to group

To: polymicrogyria@ <mailto:polymicrogy ria%40yahoogroup s.com>

yahoogroups. com

Date: Wednesday, August 19, 2009, 7:21 PM

Hello everyone!

Our 4 month old was just diagnosed with PMG and I was thrilled to find a

group of people who have gone through or are going through the same thing.

However, I hate that child has to go through anything like this.

We live in South Carolina, so I was wondering if anyone else in the group

was in this area.

Thanks!

Ellen Wingate

April 5, 2010

Crystal, welcome!Â 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.Â 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!!Â Hang in there and just love him.Â The worries won't stop, but

you will become stronger in dealing with all the issues.Â

We are all here for you.

Bridget

________________________________

To: polymicrogyria

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

Subject: New to group

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

April 7, 2010

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

From: lodge.bridget@...

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

________________________________

To: polymicrogyria

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

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

April 8, 2010

Crystal,

We all have to support one another. It is sad that it seems the people who

should support us the most in this tends to cause the most stress and turmoil.

Emmalee's dad does not go to appts with us. He blames it on his health

condition. However he goes when he wants where he wants when its convenient and

something he wants to do.

My problem is his mother. She thinks there is nothing wrong with Emmalee. You

see it doesn't fit into her perfect little world. She insists on going to appts

and then tries to talk over me and tell the drs that they are wrong that they

don't know Emm. I am a nurse and although I don't know everything I do have

some medical knowledge and am not stupid by no means. She however is the

smartest dumb person I know! Ha! So I guess the lesson is it isn't always a

good thing to have family involved! Luckily my mom is supportive and trusting

and thinks I do a great job. I have two other daughters and they are doing well

too so its not like I am new at this! She questions everything I do not just

the medical part of Emm's life. It is causing a huge strain on everyone.

I am here for you anytime! It is so nice to know there are people who you can

trust and talk to and they won't judge you.

Jodi-mom to Emmalee almost 1 year!

Subject: RE: New to group

To: polymicrogyria

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.