Gads, sorry to hear about the sarcoidosis. That's just downright rude to have TWO disorders that aren't well understood!
Interestingly, I had two inflammatory spots in my lungs show up. My PCP had nothing to say about them, and when I showed my neuro the report, she wanted to know what my PCP had to say. When I told her that my PCP had nothing to say, she looked a little surprised and said, "Well, that is interesting to me," but nothing more. I didn't know whether to laugh or cry.
She did refer me to another neurologist/neuromuscular specialist at the Univ. of MD just to see if he has any thoughts.
Quote:
Originally Posted by echoes long ago
it can get quite maddening after a while....even the tests cant be trusted to be accurate for your individual case.
i have another illness now, diagnosed in June 2018 via biopsy....sarcoidosis.
less is known about the causes, and process than even peripheral neuropathy. testing is limited to imagining, cat and pet or biopsy. none of the blood tests are accurate. treatments are also limited, either prednisone, or methotrexate. prognosis is there is none, it can stay active, it can become less active, it never leaves your body so there is no remission.
to complicate matters, im sure i have had sarcoidosis since at least 2006, which was my first chest cat scan that picked up lung nodules, which was finally diagnosed to be sarcoidosis in 2018.
now the complexity of did sarcoidosis cause my peripheral neuropathy which first presented in 2001, or did sarcoidosis and peripheral neuropathy develop independently from the same toxic exposures. i am sure that i will never know. like i said it can get maddening
|