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Re: Update on Son

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Please email me I will talk with you email, how old is your son.Tell him to hang in there.there used to be a Fitzgerald,MD at UT, basically hopefully the best time to try to get this stuff is at first with Prednisone.Do Not give up, tell him there are limited thinking on this disease.Subject: Update on SonTo: Neurosarcoidosis Date: Thursday, October 2, 2008, 6:05 PM

Thanks for the previous welcome to the group. I'm here for a 44 yr

old son who was diagnosed with Neurosarcoidosis last May. He's

currently in the hospital again trying to get him adjusted to meds.

He was previously on Prednisone.. .then Azathioprine. Now he's on

both. The biggest problem we are having now is his memory and his

balance. One minute he seems normal and the next he is talking about

something that is totally off the wall. Yesterday he was convinced he

had been in a hospital in Oklahoma and had just arrived at this

hospital in Fort Worth, Texas.....he' s been here for two weeks. He

thinks he's going to be able to go back to work.....he was put family

medical leave because they felt he was a danger to himself and

others...he' s one of the top mechanics at a local Mercedes dealership.

I point-blank asked the doctor when he could go back to work and he

said he was going to take months for the meds to really take control,

he may never fully recover, and would probably never go back to work.

Greg is not accepting that information. ...which is great, I want him

to be a fighter! From your experience.. ..will he ever be able to be

independent again?

I'm wondering if any of you know of any doctors in the Dallas-Fort

Worth area that specialize in this disease and you would recommend?

One of the doctors mentioned he was trying to get hold of a doctor at

University of Texas Southwestern Medical Center in Dallas. He thought

they might have a program that would help. Other than that, they are

thinking Mayo Clinic.

Thanks for all your information and please keep Greg in your thoughts

and prayers.

Hugs,

/ Texas

Cancer Survivor since 1986

Lymph Node & Pulmonary Sarcoid - 1970

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