Re: My Wife Sue - ON/Sarcoid/ NMO

[Guest guest]

Been dealing with a bunch of punters/Drs NYC area

On 60 mg pred daily til more tests come in

Hopefully the pred won't distort the test results.

Is a PET scan best way to dx neurosarcoid?

Neurosarcoidosis is a diagnosis of omission. When everything else has been ruled out-- they may call it NS. There is NO test that can prove NS. If you have a positive biopsy from somewhere else in the body, and then start having signs of NS-- neuropsych testing can be a good tool in diagnosing the cognitive changes that come with NS. Many of us don't have any lesions or granulomas on the brain- but have vasculitis where the swelling of blood vessels interfers with different brain functions. It can be intermittent, so it's hard to prove.

How can i keep her sane on steriods?

This is the hardest question to answer. Many of us can't tolerate the high dose steroids, because of the side effects. If they are too bad, talk to your MD. There are several other steroid sparing drugs that do as well, if not better than prednisone. Imuran, Methotrexate, Plaquenil, Arava, Humira, Enbrel, Remicade all can be used to treat sarcoidosis. It generally takes a combination of meds to get the ones that work for you.

Also on 6 mo regiments of rituxan for the nmo which isnt working

Also had plasmapheresis/cytoxin....

Rheumotologist tests just came in all normal

Any advice?

Thanks

and Sue

Any one on the Marshal protocol?

Several of our members have been on the MP. They are here because it did not work for them.

Any ass't/guidence greatly appreciated

Going to see neurosarcoid dr and pulmp sarcoid dr shortlyy

Here are a couple of LINKS that can help you out.

Foundation for Sarcoidosis Research http://www.stopsarcoidosis.org/sarcoidosis/faq.htm

Great for drug info-- see the 2005 Drug Guide and it has a great breakdown of DMARD's, BRM's and Immunosuppresants. (Disease modifying AntiRheumatic Drugs, Biological Response Modifiers)

http://www.arthritis.org

Also, in our LINKS and ARCHIVES-- are many articles that explain sarcoidosis-- and the different approaches you can take. It also lists the tests that should be done.

As for the biopsy-- and bronchoscopy may help. It's one of the least invasive procedures and if you have granulomas in your lungs- then it can save alot of time in getting the correct diagnosis. It can definately stave off having to have a biopsy of brain tissue-- which is not only very hard to do, but the chance of getting a good sample is guess work, that can really screw you up if any other part of the brain ends up injured.

The LINKS and ARCHIVE address is at the bottom of this and every email that goes out from the group. If for some reason, you scroll down and don't see it-- I'll send it via a second email to the group.

Take care,

Tracie

NS Co-owner/moderator