hi - new member/concerned friend of a patient.

[Guest guest]

Hi, my name is , and I actually joined the group to find

information for a very good friend (Ed) and his family. We are

located in Western New York, near Buffalo. His father (Bruce) was

recently diagnosed with neurosarcoidosis, and was given NO

information. Last night, as we visited him in the hospital, Bruce

was showing the nurse some literature I had printed out, and she

admitted that none of the nurses had ever heard of sarcoidosis, much

less this kind.

It started for him before Christmas. As far as I know, he had been

feeling fine, then had a 'spell' where he lost feeling in his left

leg. He ignored it, but when it happened again at work, they sent

him to the hospital. At first, they thought he was having mini-

strokes. They found an enlarged lymph node in his chest, and a

slight swelling in his brain (which was causing the dizziness and

loss of feeling). They biopsied the lymph node in his chest, and

ruled out cancer. They sent him home with steroids. Since then, he

can no longer lift up his left leg, and, because he cant move it,

has a blood clot in that leg. I watched the nurse try to get him to

move his foot at all last night, and he couldnt do it. It's hard

watching him try, because he's such a proud man (as is his son),

they both hate admitting to a weakness.

Granted, I am not that involved with his treatment, doctors visits,

etc, but I am trying to find any information to provide my friend

and his family. They are looking in to treatment centers, since

they are less than pleased with the attitude they have been given,

and the lack of information (he had NOTHING on this disease until I

gave him some this past weekend, which was the first I'd been told

of his diagnosis - he'd been told the first time he was in the

hospital).

I was hoping I could get some direction in websites that are great

for patients. Everything I've found so far is so clinical...and

while I am able to read and understand most of it, they can not.

Thank you for any help you can give me/them!