RE: I'm a 53 year survivor of PMG and a HYPOTHALMIC HAMARTOMA

April 15, 2012

Hi Glen, and welcome to the group. I am just curious, if during your quests to

be seen by specialists, have you seen Dr. Dobyn's at Seattle Children's

Hospital? I realize you aren't a child, but he does a lot of research regarding

PMG, as well as Dr. Chang, and Dr. Walsh's groups.

PMG has traditionally been viewed as a children's diagnosis but that is changing

rapidly! Many adults, such as yourself, as well as older children, have gone

undiagnosed basically due to lack of technology and information when they first

starting having problems.

The PMG Awareness Organization, Inc., is working diligently to learn more about

all of those affected by PMG and there is a great need to show that there are

MANY who are undiagnosed.

I would love to learn more about your medical history and PMG experiences. I

realize PMG is not your only diagnosis and I don't have any information about

HH, but I enjoy learning as much as I can. You can get a lot of information and

Resources from our website at www.pmgawareness.org and you can contact me

directly at catrina@....

Again, welcome to the group! I hope we can help you with your needs.

With Appreciation,

Catrina Byrge, R.N.

C.E.O.

PMGawareness.org

catrina@...

>

> my name is Glen Schallman living in the Seattle Wa area, I was diagnosed with

PMG and Hypothalamic Hamartoma march 1st 2002 at Barrows in Phoenix Az. I have

had this condition since birth. I ahve been to so many Neurologists in Chicago,

Seattle and Phoenix and every time I get a EEG or seizure monitoring study my

seizures show up as Suedo Seiures and all I get is I need neuro Psych!! I get

TIA's which don't show up either...with these episodes I cannot speak or move,

but I am alert to things around me. does anyone have the same episodes I do????

along with this I have type11 diabetes, adrenal insufficency, hypothyroidism,

headaces and lots of tngling right side of my head. I would like to know more

about the group. I belong to www.hopeforhh.org and involved with the NBTS,ABTA

and other brain tumor/condition organizations and participate in all the walks.

>

> GLEN B SCHALLMAN

> 53 YEAR SURVIVOR

> KENT WA

> turtlebrain@...

>

April 15, 2012

Have you ever considered seeing a nutritionist or chiropractor or been seen like

Cleveland Clinic large epilepsy surgery cneter? My daughter is 5 and she has

cerebral palsy and seizures. She has many complaints of headaches, dizziness,

sleep issues, very distracted, emotional and odd neurological symptoms. When you

have an abnormal brain is can cause the natural chemicals to be regulated as

they should. Some doctors specialize in mitochondrial disorders which can be

caused from a brain injury. They give you many supplements that help your brain

to be better regulated. my daughter has started on B6 and now CoQ10 which has

really helped her.

Diane

April 16, 2012

Hi Diane,

What dose of B6 and coQ10?

thanks

To: polymicrogyria

From: deszone25@...

Date: Sun, 15 Apr 2012 23:08:28 -0400

Subject: RE: I'm a 53 year survivor of PMG and a HYPOTHALMIC

HAMARTOMA