When you are full of despair and need someone just to listen and you want to hear I've got the ear. But I need HELP too to build this fledgling foundation and I NEED to help you navigate through this nightmare of having a brain tumor nobody wants to acknowledge. You won't get an answering machine on Sundays, it's me! Please be aware of the time difference and respect the hours since I have a 5 yr old. Right now where I live it is about: 05:45 am. So DON'T CALL ME NOW!


Your donations will help support our cause. We are waiting for the last piece to finish up the complete non profit status but if you need a number then I have one!.

Hi Catherine,
I just got my MRI results back and they found a 3cm arachnoid cyst in my
anterior middle cranial fossa.
I noticed this location is not mentioned on your site with the stories listed. Is it a common location for arachnoid cysts? I am not finding much info on this exact location.  It was explained to me being in the right cheek area.
 
I am thinking of submitting my story but since I have only been told of this arachnoid cyst
yesterday so I'd better wait.
 
They are trying to rule out MS with me.
They have found nerve damage in my left leg and foot (evoked potentials test)
The neurologist wants to repeat the MRI of the  brain in 6 months but didn't say why.
I assume it's to look at the cyst.
They are doing a full spine MRI on December 16th.
 
I have light sensitivity in both eyes.
I drag my left leg and foot when I walk.
Tremors in arms and legs all day long worse when I am nervous.
Bowl problems
balance issues.
 
I have only had these symptoms for about 4.5 years now.  They got noticable after the birth of my last child.
 
I wanted to thankyou for your invaluable website and information contained in it.
It's been a huge support to me over the last 2 days and many more days to come.
Best Regards,
Jennifer D
age 35
Orlando, FL
 

3-23-08

Currently seeing a movement disorder specialist.
STILL NO DIAGNOSIS!!!~ They think it could be Parkinson's disease.
THE NEUROLOGISTS WONT EVEN DISCUSS THE CYST. Not even for a minute.
They completely dismiss the whole thing. But yet they still act like they don't know
what is going on with me.

They have ruled out MS completely.
Lyme Disease test came back negative.
ALL blood work came back healthy.
Spinal Tap came back slightly elevated but within normal range.

My weakness in my legs continue to decline. Worse on the left side.
CRAMPING in my toes is a lovely new symptom.
The sensitivity to noise and light is worsening.
The tremors are right hand dominate but have not improved.
The brain fog is deepening.
The balance issue's are constant.
Fatigue is horrible go about 45 minute then have to lay down.
I am on mirapex and it does help me get to sleep at night.
I have pain at the base of my neck down my spine and into hips.
I am leaning over to the left when I stand/walk or sit.

I am 37 now and feel like I have been left alone to battle this even with my
own research I completely freeze up and blank out in front of doctors.
So, I am my own worse advocate it seems.

JenD

Tampa FL