Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 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 Quote Link to comment Share on other sites More sharing options...
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