Re: Re: Update on Son- ->> Tracie

[Guest guest]

, it really is wonderful when a family member comes in and helps out the way you are helping Greg. To be informed and learning about this disease (or any condition) is empowering to both you and to Greg.

We're here for both of you-- and don't hesitate to ask questions-- if we don't have the answers right away, we'll help research the issue and that way we all learn more-- inch by inch.

The other group I would love to have you check out is FSR--www.stopsarcoidosis.org. They have some wonderful brochures that you can order- and take in to Greg and his docs. They also have a couple of MD's that actually have sarc-- so you get both the "patient view" and the "doc's view". The other very very excellant site is www.sarcoidosissharma.com. Dr. Sharma has spent his entire career studying sarcoidosis-- and is considered one of the foremost experts on sarcoidosis. He may be able to have you send him Greg's medical records and be willing to consult with Greg's doctors to get this monster back in it's box--- It was his protocol that has me functioning as highly as I am--- which if you looked back in the ARCHIVES to early 2001, 2002-- you can really see how far I've come.

Give your son our best-- and we will keep you all in our thoughts and prayers.

Sincerely,

Tracie

NS Co-owner/moderator

Update on Son> > > 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>