Neurosarcoidosis

Hi. I was just diagnosed with Neuro sarcoidosis last month. I'm a white female. I have lost the hearing in my left ear. Have you lost any hearing or vision?

Yes I am blind in my right eye and real bad tinnitus in my right ear, we are rare birds are we not Hahah

I have also lost the use of my legs, I was diagnosed almost 2 years ago on May 15 2914, I have had 9 LP's and just recently iI had a Thoracentisi done on my right lung, I have had Pneumonia 3 times since Oct of 2015 I just don't understand why I have been hit by all this in such a short time, I was a Ramp Manager for a major airline before all this, never sick once, I pray you are not hit as hard as i have been 

 

Well it seems I am on the party too. I 'm from Poland and I have been diagnosed neurosarcoidosis since 2015. My is different thou than yours, I have huge hormon issues and I take 4 hormons in pills and testosterone in shots in ass. The dead cells are accumulated between front and back the pituitary gland parts (the connection between them). It was 6 months while I felt like a girl as I didn't have testosterone at all, strange feeling. It seems that endocrynologists here are better than neuro and pulmonologists that had any experience with this disease. My endo said I probably will take those pills for my life. But overall I can't be more sorry for you guys and hope I won't have this issues in nearest future.

 

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