Re: Next step

[Guest guest]

I take it that the reason they decided it was NS from the spinal tap is that the fluid did not have the protein bands that say it's definate MS.

What's interesting is that there are no specific tests that say NS-- and that they have to rule out the other AI diseases to come up with NS.

I wonder if the lung xray showed the ground glass appearance that is indicitive of sarc-- and can be easily biopsied. It'd be worth asking,.

Did you have a high CRP (C-REACTIVE pROTEIN) AND ACE (Angio ?? enzyme) or ESR-- Erythrocyte Sedimentation Rate in your spinal fluid. These are all tests that say there is an inflammatory disease-- but are not specific to sarcoidosis. (Lupus, Arthritis, MS, all can increase the inflammatory response)

These are definately hard decisions we face-- do we go the extreme way, or do we look for other markers?

Talk about a crapshoot.

Take care,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Sunday, December 7, 2008 8:25:05 AMSubject: Re: Next step

What was found with a MRI is an unexplained thickening around the brain. With a spinal tap it was diagnosed as NS. There has been no search to find Sarcs anywhere else. The problem I have that started this Dr. trail is lightheadness that sometimes leads to dizziness if I do not lie down. I am having the lightheadness every couple of weeks and it can last from a few minutes to several hours. It seems like the path is taking a radical turn and it is playing on my emotions alot because of such little knowledge. Plus the lightheadness is continuing. I had a chest xray at the emergency room when they thought I had a TIA.several months ago.

little r

From: tracie feldhaus <tiodaat2001@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. comSent: Saturday, December 6, 2008 6:52:11 PMSubject: Re: Next step

Ron, are there specific lesions they can see on the brain? I know this is the scariest procedure, as it is determinent only if they hit the exact spot where there is a problem. I know you are an extreme case, and that you have alot going on.

Have they ever done xrays of your lungs, gallium scans where they inject the dye and then do the ct scan? If there is a problem spot the gallium dye hangs around there. If you have lung involvement, they can do a bronchoscopy and get samples there-- if it's positive for sarc, then if they have ruled out all the other autoimmune diseases, it pretty much leaves neurosarcoidosis as the answer by default.

I know you've probably answered the lung question previously, but my brain is mush right now-- so refresh my memory please.

Take care,

Tracie

NS Co-owner/moderator

From: rawlingsron <rawlingsron@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. comSent: Saturday, December 6, 2008 6:32:14 AMSubject: Next step

Now the drs are back to wanting me to see a neurosurgeon and have a brain biopsy. Not sure about that.