Re: Recently diagnosed with Neurosarcoidosis-What to do ab...

[Guest guest]

Welcome to you , sorry we have to meet under this condition. but it sounds like my normal NS and CNSV symtoms.

I think at one time or another everyone here has been told that its in there head. when I heard that I ran the other way and fast, because I was crashing and fast . I fault 9 different neuros in my local area until I found a good dr at the teaching hospital in my state.

I was on large amounts of steriods for many years until I became toxic, I was mis dx. I was told I had lymphoma, migraines, ect....

my husband told them you tell me anyone who's face droops when they have a headach, to look like you have a stroke, among the other symtoms.. but got no where.

I had spinal taps with the new dr, and angi-gram, lung function test , liver biopsy, and the rheumy confirmed the NS dx.

than I was started on Imuan, plaquneil, elevil, senimet,oxycontin,durgestic patches, among others. and its helping,

I am not in resmisson but i get through the day with a steady level of pain in my head of a 7/10 compared to 10+

Many Blessings and pain free daylove to "ALL" Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food.

[Guest guest]

Welcome to you , sorry we have to meet under this condition. but it sounds like my normal NS and CNSV symtoms.

I think at one time or another everyone here has been told that its in there head. when I heard that I ran the other way and fast, because I was crashing and fast . I fault 9 different neuros in my local area until I found a good dr at the teaching hospital in my state.

I was on large amounts of steriods for many years until I became toxic, I was mis dx. I was told I had lymphoma, migraines, ect....

my husband told them you tell me anyone who's face droops when they have a headach, to look like you have a stroke, among the other symtoms.. but got no where.

I had spinal taps with the new dr, and angi-gram, lung function test , liver biopsy, and the rheumy confirmed the NS dx.

than I was started on Imuan, plaquneil, elevil, senimet,oxycontin,durgestic patches, among others. and its helping,

I am not in resmisson but i get through the day with a steady level of pain in my head of a 7/10 compared to 10+

Many Blessings and pain free daylove to "ALL" Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food.