I was diagnosed with Neurosarcoidosis in 2001 and over the years biopsies confirmed Systemic Sarcoidosis in most of my major organs. I do not know if I was born with this or not. I did get my first severe headache at the age of 15 and was fine until I gave birth to my son at the age of 20 in 1989.
Then everything went down hill from around the time he turned nine months old. Then, for many years, I was getting sicker and sicker and no one knew what was wrong with me. The blood work showed it was autoimmune but I didn’t fit into any of the known disease categories at the time. So I was just put on high doses of steroids until I went on my own and found a neurologist in 2000-2001 and before I left his office he told me what was wrong with me.
Many other neurologists locally didn’t know but I hand carried four charts to my now-neurologist since 2000 and he did three more spinal taps and more MRI’s looking at each one himself and also referred me to a pulmonologist, rheumatologist , cardiologist, and a gastroenterologist. I had two liver biopsies , a kidney biopsy, saw an eye doctor due to spots on my eyes.
It has been 15 years since my diagnosis and I am running out of organs for this disease to attack, My heart is so far the lucky organ.
I was tried on almost every immune suppression for sarcoidosis and R/A since most medications are not approved for Sarcoidosis and I don’t know why!
I am now 48 years old and now on I-l6 Drug Actemra infusions, steroids , Methorexate injections and other drugs for organ problems related to the Sarcoidosis. The doctors tell me that they normally don’t see Sarcodosis attack every organ, that most of the time it sticks to the lungs.
I feel myself wearing down and fear giving up at this point. Sometimes I feel like just going off all the medications and letting it take its course– but I have a wonderful husband and son that I couldn’t do that to. I guess I do want to live but I want a cure. I don’t have much of a life, chronic head pain everyday, and in and out of kidney failure and I spend more time in the hospital than at home, and I am tired of one surgery after another.
The only advice I could give to other Neurosarcoidosis and Systemic Sarcoidosis patients is to not give up on a diagnoses and don’t give up on life, after all, you only have one.