newly diagnosed and lots of questions/concerns

[Guest guest]

I was diagnosed with sarcoidosis one year ago (>40 nodules in my

lungs) then last May started with neuro symptoms, but wasn't

diagnosed with neurosarcoidosis until about a month ago. I have

numbness and tingling on the right side of my face, both feet and

legs, headaches, neck pain, blurry vision, dulled hearing, back pain,

weakness in my legs, really bad fatigue, difficulty concentrating, no

bowel or bladder sensation (no incontinence yet, but almost-just

doing timed bathroom trips). I have taken prednisone off and on (more

on than off) for the last year for my lungs. My neuro symptoms have

gotten worse at times (last sept I couldn't walk or even wash my own

hair). Now I can't work or drive. Oh yeah, I have dizziness and

vertigo with no warning and once I had everything go black while I

was driving but I was still awake (that's when I quit driving). A few

days ago I started taking Plaquenil. It seems to be helping with the

pain already. Any advice, suggestions, ideas of what's ahead? How to

deal with the changes (I gained 40# with prednisone over the last

year and before now I was never over weight), I have always been

strong/leader/independent type person. Now can do very little of what

I used to do. It sure would help to talk to someone who understands.

My husband is very supportive. This is very hard on him and my 3 sons

(11,13, and 17) but they are all very kind and loving. Thanks for

listening! God bless all of you who are in this group and willing to

support and help others. Thanks so much!