new to group

[Guest guest]

My mother has Giant Cell Arteritis. Her immune

system is attacking the cell walls of her

arteries, especially the cranial ones.

Welcome. This is a good place to be, both for

support & for information.

Aubergine

AOL IM: ShadoCrone

MSN MS: Shadow_Crone

YM: shadowcrone

ICQ#: 11443880

Wildly Insightful & Talented Crone with a Harley

-----Original Message-----

My name is Terry, I am 40 and mother of 3 kids,

recently diagnosed

with a rare autoimmune disease called

Polyarteritis Nodosa,my immune

system attacks my circulation to my vital organs.

In my case my

circulation to my stomach, liver and intestines

is compromised

causing me great pain. I am on methadone 10 mgs

twice a day with oxy

IR 5 mg every 6 for breakthrough pain. i am

undergoing chemotherapy

treatment and steroid treatment. also on

neurontin. how do you all

cope with your pain. i have tried everything and

i am becoming more

tolerant of the medicines. i am glad to have

found this group. thanks

for letting me share.

---

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[Guest guest]

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) We got to the street which was rather busy with

lunch crowds breaking from major factory. I stood there and

processing when was it safe to cross...and my little Gizmo gave me a

tug and pulled me accross after looking both ways that is When

training an assist dog it's good to take him quite literally

everywhere with you. Since my illness, my dog does not leave my

side. An assist dog can pick up things for you, be personal support

should you fall or etc. He can hold your emergency info and med list

as there are pockets in his vest.

It's a huge gratification when you teach your dog...one more new

thing. I am looking to get a larger dog though to train also as it

could be very helpful when I need help say ..getting up and standing.

You need a larger animal to help there...at least I do LMAO!

It used to be labs used almost exclusively as assist but there has

been a growing trend to have peekaneeze (butchered that one!) as

assists. I found my vest on the internet with patches. No body

questions your assist dog in public places because the laws are so

strict and the group is huge that nobody wants to tangle with those

with disabilities. You can have your dog certified as assist but you

don't have to. Every assist dog is different and trained by

you..just for you.

Let me know if anyone follows up with this as I have, I would be very

interested in discussion on how it helps you!

God Bless!

*the one with the shitizu and parrot named sweetpea!* I took that

from JANE..the one with hounds!! ))

> 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).

[Guest guest]

Hi Roxanne, yes I find any kind of comedy (as long as it's actually funny &

makes me laugh!) is about the best mood-breaker there is. One can only be

miserable so much. Aylwin

[Guest guest]

Welcome to the group Darlena. I am so sorry you are having to deal with

so much. I am pretty run down right now and have visitors staying with

me till next Thursday, so will write more once I feel a bit better.

Sandrea

[Guest guest]

Thank you ! Having visitors for that long is big challenge for us. I hope

you have a lot of fun and can enjoy them. Hope you feel better, too.

Darlena

Re: New to group

Welcome to the group Darlena. I am so sorry you are having to deal with

so much. I am pretty run down right now and have visitors staying with

me till next Thursday, so will write more once I feel a bit better.

Sandrea

[Guest guest]

Awwww Alywin,

I'm sorry you've been forced into the Party pooper position but

try not to be too hard on yourself. I used to come over to canada on

the 4th to watch the fireworks from a friends backyard. Those were

the days!

You started falling? *are you following me again?* At least I'm

getting a little notice now before I fall, I stop when I feel the

twinges in my calves that come between the standing and the " hello

floor " .

Gizmo is a shitizu, just a lil guy that is completely devoted to me

and especially when I'm at my worst, he is my shadow.

Amazingly, it's taken me an hour to get this post to you..I'm

falling out so I'm being ordered to wrap it up and close my eyes.

Huggz, don't worry bout the mumbling thing, I hear it's a sign of

intelligence! LMAO! Those that don't know that, don't count.

TC of yourself and since your following me lately....so will I.

cynthia

[Guest guest]

Hi everyone,

I'm 19, I was diagnosed with epilepsy three years ago. Recently I had a seizure,

hit my head, and had an MRI, the first I've ever had. My neurologist says that

there's evidence of polymicrogyria, although he is getting someone else to look

at the scans. I have always had mild motor delays, sensory issues, and hearing

issues, but this term hasn't come up before.

Has anyone else had a late finding/diagnosis of polymicrogyria?

[Guest guest]

Dear, am sorry that's the first time a hear such a story how old are you??

Best Regards,

Lina

> Hi everyone,

>

> I'm 19, I was diagnosed with epilepsy three years ago. Recently I had a

seizure, hit my head, and had an MRI, the first I've ever had. My neurologist

says that there's evidence of polymicrogyria, although he is getting someone

else to look at the scans. I have always had mild motor delays, sensory issues,

and hearing issues, but this term hasn't come up before.

>

> Has anyone else had a late finding/diagnosis of polymicrogyria?

>

>

>

>

[Guest guest]

Hi, . I have heard that many adults are diagnosed on a head scan

following a traffic accident or something similar. Many people who have

" spots " of PMG have experienced few symptoms of it, in contrast with many

of the children whose parents' write here. " Schuyler's Monster " by

Rummel-Hudson is a good read - written by a dad, describing the first

several years of his daughter's life and their path to the eventual

diagnosis. I wonder if you might find it useful as you contemplate what

this means for you. One other thing - when my son was still in the process

of diagnosis and consultation, several different doctors made note of how

relatively difficult PMG can be to diagnose. It's really about the quality

of the MRI and the experience of the (neuro) radiologist. How's everything

going for you since this came up?

(mom to 5)

--

Out of the Gray

Serving caregivers who give their all.

Donate here: http://stylewithpurpose.blogspot.com/

[Guest guest]

My daughter was diagnosed at 11. But, it was a correction of a previous

diagnosis.

Sent from my iPhone

> Dear, am sorry that's the first time a hear such a story how old are you??

>

> Best Regards,

> Lina

>

>

>

> > Hi everyone,

> >

> > I'm 19, I was diagnosed with epilepsy three years ago. Recently I had a

seizure, hit my head, and had an MRI, the first I've ever had. My neurologist

says that there's evidence of polymicrogyria, although he is getting someone

else to look at the scans. I have always had mild motor delays, sensory issues,

and hearing issues, but this term hasn't come up before.

> >

> > Has anyone else had a late finding/diagnosis of polymicrogyria?

> >

> >

> >

> >

>

>

[Guest guest]

Hi ,

Thanks for the reply. My neurologist, who's been treating me since we discovered

my seizures, consulted with the radiologist and several others before telling

me. He also said he was going to look around for another consult, to be sure. I

think he said I have it in parts of my temporal and parietal lobes.

I'm doing okay. I've looked into the condition, and it's really helpful to know

why I've always struggled. My parents aren't around, but I do have my twin

brother, who's never had the same problems I have with hearing, speech, sensory

perception, motor control, and so on. He's been fantastic, always helping me

out, but now more than ever.

Thank you for the recommendation! I looked Rob up, and read his blog and book.

It helped a lot.

>

> Hi, . I have heard that many adults are diagnosed on a head scan

> following a traffic accident or something similar. Many people who have

> " spots " of PMG have experienced few symptoms of it, in contrast with many

> of the children whose parents' write here. " Schuyler's Monster " by

> Rummel-Hudson is a good read - written by a dad, describing the first

> several years of his daughter's life and their path to the eventual

> diagnosis. I wonder if you might find it useful as you contemplate what

> this means for you. One other thing - when my son was still in the process

> of diagnosis and consultation, several different doctors made note of how

> relatively difficult PMG can be to diagnose. It's really about the quality

> of the MRI and the experience of the (neuro) radiologist. How's everything

> going for you since this came up?

>

>

> (mom to 5)

>

> --

> Out of the Gray

>

> Serving caregivers who give their all.

>

> Donate here: http://stylewithpurpose.blogspot.com/

>

>

>