New to the group and sarcoidsosis

[Guest guest]

Hi

was recently diagnosed with pulmonary sarcoidosis 4 months ago

after they saw many small enlarged lymph nodes in the chest, 2 large

lymph nodes which they biopsied and two small lesions in both lung

bases. My recent eye exam shows leasions in both iris's.. but not

the nerve yet. My biggest complaint is that this all started in

jan when I became lost while driving and couldn't find the right word

for things. Cognative dysfunction. short term memory loss, executive

functioning poor. Then I was diagnosed with Narcolepsy and

cataplexy. What?....... I've went from hardly needing any sleep to

being sleepy all the time. that was my first diagnosis the

sarcoidosis came second. So it only seem likely that the sarc

affected my brain stem that controls my sleep cycle and caused or set

off the narcolepsy. While nothing is showing up on any mri/ctscan,

spinal tap. I still have these memory issues and functional issues

that frustrate me and my family. my neurologist while he suspects

that I may have neurosarc, will not begin treatment without having

something show up on some kind of test. I told him that by the time

it shows up the damage will be than likely be permenent. He said I

could get a second opinion from a neurosarc specialist. But first

i'm seeing the sarcoid specialist at Pennsylvania hospital. the only

problem is he is a lung doc and not neuro. So i'm not sure he is

going to treat because lung wise, i'm really not that severe unless

my new ct and mri show advancements in the size and number of lymph

nodes as well as nodules/lesions in my lungs. this is very

frustrating.

Jeff