Newbie

[Guest guest]

Hi all,

I am writing on behalf of my bf. We have spent the last 2 years in hospitals, ERs and doctor offices trying to determine what is wrong with him. In summary, he has experienced the onset of seizures, facial palsy at times, numbness in various parts of his body, incredible pain in his head and spine, among other numerous symptoms. They eventually were able to control his seizures, but then they found a lesion in/on his spinal cord. He was put on a high dose of steroids, which seemed to have help his back pain some and did apparently shrink the lesion. However, he was still complaining of back pain and head pressure. After testing his csf, his neurologist and neurosurgeon, seemed to think that it was not a spinal cord tumor, but rather an inflammatory disease. Which one, however, they did not know. His neurologist suspected that it was sarcoid and therefore ordered a chest CT, which came back negative. He

then referred him to see Dr. Baughman to do a biopsy. Dr. Baughman did a bronchoscopy, but also came back negative. He then referred him to an ENT to do a biopsy of his lip and then right behind the ear, both of which were negative.

He just had a repeat MRI done because during his last neurology visit, his neurologist noted that his optic nerves were very swollen indicating head pressure again. He even asked a doctor to come give a second opinion and the first thing that the doctor said was "So, have you been blind since you were born?" It was a very scary moment. Well, the results of the MRI did show some swelling, but perhaps more importantly, it showed several white spots which were not present less than a year ago. This seems to affirm the notion that he has some inflammatory disease. The neurologist is leaning away from MS and towards neurosarcoidosis, even though all biopsies have come back negative. He is consulting with the neurosurgeon to determine if 1) he feels that a brain biopsy is feasible or 2) he should just start him on a high dose of steroids and see what happens.

I know that was a long intro, but my question is, is there anyone here that only has sarcoid in their nervous system and nowhere else? If so, how were you diagnosed and what is your treatment like? Also, if you know any physicians in Ohio that specialize in neurosarcoidosis please let me know. I know that Dr. Baughman specializes in sarcoid, but not specifically neurosarcoidosis.

Thanks,

EW