Hi Luanne,

I'm Jay and I live in Tampa. My arc showed up on films in 2001. I was told about it in 2004, when I had another MRI and it was known as advanced adhesive arachnoiditis. The doctor I had seen told me to get the pain pump removed immediately. He also said that there was no cure for it/me, and he wished there was something he could do for me...Fortunately, he was a neurosurgeon who I had been referred to by my pain doctor...He is very good and is familiar wiith the disease, and treatments for it. I'm having a spinal stimulator put in soon.

 

As for the cellphone ringing in my pants, I have that constantly but was too embarassed to mention it. I have the feeling that large amounts of groups of very small worms are moving in a liquid fashion up and down my thighs to my legs and back. Talk about not having something you feel comfortable bringing up around the dinner table!

My feet have swollen two sizes since the onset. I have a good wardrobe, and it's expensive and saddening to have three different size shoes in my closet... I am now at the point where the only thing I feel comfortable wearing is sandals. Any kind of dress shoe makes my feet swell. I also have my partner drive when we look at jobsites. I'm only good on my feet for a toal of about an hour or two, before the pain is just unbearable.I've converted to a notebook, as sitting at my desk with my desktop has become too uncomfortable. I have a wonderfully supportive wife who helps me in many ways.

 

That's way too much about me. How long have you had arc, and what are you taking for it?  Do you have someone to help with your day to day needs?

 

Kindest regards,

 

Jay M.

----- Original Message ----
From: luluriedl <luannesplace2@...>
To: Arachnoiditis@yahoogroups.com
Sent: Thursday, May 4, 2006 7:17:26 AM
Subject: [Arachnoiditis] Ouch!!

Hi, my name is Luanne and I also have Arachnoiditis. I'm glad to find a
place where there are people who understand what's going on in my body.
It's hard to explain to people who do not understand. They just think
that I'm weird. The look on thier faces when I try to explain that I
feel water running down my leg, or that I jump because I just got
shocked with an electric cattle prod. Sometimes I feel my cell phone
vibrate in my pocket only to find out that my phone is in my purse and
that it's the ara... My feet, neck and hands are swollen. I've had so
many blood tests to find out why different things are going on. My
primary doctor wants to see if it could be anything else. It's not. I
know what it is, and they think that I'm nuts when I say that it's the
arachnoiditis. Is there anybody in Palm Bay or Melbourne, Fl that I can
talk to who will believe me? Back later. Luanne