I'm New Here

[Guest guest]

Hello. My name is Ed and I'm just starting to research GBS.

I live in the Sacramento, CA area. I've just begun to look for a doctor in

this area.

This is the start of my journey.

I'm 53, just retired because I can no longer walk. My knees are shot. I've

been large most of my adult life. I'm a fulltime wheelchair rider now. I'm

about 270.

Please be gentle with me <smile> but I could use all the direction I can

get. I look forward to learning. I'm already encouraged by the few posts

I've read today.

Thanks in advance for your help.

Ed Kemper & Delores

edkemper@...

[Guest guest]

You have found the right place. You will find plenty of info and support from this site. Ask away about any questions. Someone will answer or point you in the right direction. So sorry this came upon your husband so quickly. It is definitely frightening when you don't understand what is going on.

Debbie

Subject: I'm new hereTo: Neurosarcoidosis Date: Sunday, March 29, 2009, 1:25 PM

It's so crazy because I cry as I write this. I never thought that I would have to get involved and need the support that I know I now need. My husband is 33 y/o and was recently diagnosed with Neurosarcoidosis. I'm trying so hard to understand what is really going on. I'm absolutely confused. One minute he was fine, then came a seizure in Feb 09. He was then diagnosed with this condition. Since then, they have him on 2 different types of medication that seem to make him worse. His condition is not getting any better now. He's constantly in the E.R. and ready to give up. As we speak, he is in the E.R. now. Just went this morning. He was complaining of chest pains for the last 3 days and now they found blood clots in his lungs. I just don't know what to do. We have 7 children and I feel lost without him. Please give me some support. I'm so afraid.