Okay, here goes...

[Guest guest]

I signed up for this board a little while ago and explained that I am here on

behalf of a

friend who has neurosarcoidosis. His name is and he went in for emergency

surgery

on his spinal cord two years ago and was diagnosed with neurosarcoidosis. His

surgeon

really didn't know what he was removing from at the time, but a biopsy

indicated

that it was sarcoidosis and that he also had it in his lungs. was treated

with steroids,

which he did not tolerate well and he currently has very little movement and

feeling from

the stomach down. is now 25 years old. He has good and bad days. Some of

it is a

general feeling of malaise, some of it is excruciating headaches and soreness of

muscles

and sometimes he is sick to his stomach. He now has a rash that goes down his

arms and

across his chest. He is generally unhappy with the lack of knowledge his

surgeon,

physiatrist, neurologist and physical therapist have about this condition. He

is searching

for answers and would like to get well enough to be able to improve the movement

in his

lower body.

A week from Friday we are going to see a doctor in Pittsburgh who is supposed to

have

expertise with this illness. lives near Erie, PA and Pittsburgh. If

anyone knows of any

other doctors or specialists in that area, or anywhere, really, we would really

appreciate

the " heads up " as we are actively trying to sort through this and get him the

help he needs.

I have read your posts with great care and also with a heavy heart. I can hear

how some of

you suffer every day and I know that it is painful to sometimes not have the

love and

support of friends and family. Boards such as this are necessary to help you

get through

some days. I met through a spinal cord tumor board because my son (22

years old)

had a cancerous tumor in his lower spine and i reached out to learn more for my

son.

Now I need your experience and knowledge to help ask the right questions

and not

go down any dead end streets with therapy or treatments. I appreciate the time

you take

to answer, as I know that it is not easy for many of you to sit at the computer

for long

periods. I am a researcher at heart and I will be more than happy to offer up

any

information I learn in my attempt to help . Thanks again for listening.

Joanne

[Guest guest]

Joanne, My Neuro told me to keep doing as much as I can as not to lose all movement, but also not to over do it, as what we lose we seldom get back. so I tend to push myself, not good though I end up with the Headaches, nausea etc...

I have a great ointment for the rash, and lesions I tend to get on my face and arms, I use Protopic, this is the brand name, it is great, I've been using it for years, I strongly recommend it for the rash and lesions. I hope he gets the help he needs, I have a couple of awesome doctors here in my town, I am blessed. I will keep you both in my thoughts and prayers, Marla

I signed up for this board a little while ago and explained that I am here on behalf of a

friend who has neurosarcoidosis. His name is and he went in for emergency surgery

on his spinal cord two years ago and was diagnosed with neurosarcoidosis. His surgeon

really didn't know what he was removing from at the time, but a biopsy indicated

that it was sarcoidosis and that he also had it in his lungs. was treated with steroids,

which he did not tolerate well and he currently has very little movement and feeling from

the stomach down. is now 25 years old. He has good and bad days. Some of it is a

general feeling of malaise, some of it is excruciating headaches and soreness of muscles

and sometimes he is sick to his stomach. He now has a rash that goes down his arms and

across his chest. He is generally unhappy with the lack of knowledge his surgeon,

physiatrist, neurologist and physical therapist have about this condition. He is searching

for answers and would like to get well enough to be able to improve the movement in his

lower body.

A week from Friday we are going to see a doctor in Pittsburgh who is supposed to have

expertise with this illness. lives near Erie, PA and Pittsburgh. If anyone knows of any

other doctors or specialists in that area, or anywhere, really, we would really appreciate

the " heads up " as we are actively trying to sort through this and get him the help he needs.

I have read your posts with great care and also with a heavy heart. I can hear how some of

you suffer every day and I know that it is painful to sometimes not have the love and

support of friends and family. Boards such as this are necessary to help you get through

some days. I met through a spinal cord tumor board because my son (22 years old)

had a cancerous tumor in his lower spine and i reached out to learn more for my son.

Now I need your experience and knowledge to help ask the right questions and not

go down any dead end streets with therapy or treatments. I appreciate the time you take

to answer, as I know that it is not easy for many of you to sit at the computer for long

periods. I am a researcher at heart and I will be more than happy to offer up any

information I learn in my attempt to help . Thanks again for listening.

Joanne

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer