Re: Nuts- Neuropsych testing etc

[Guest guest]

Bonnie,

You are not nuts!

That being said, one of the tests that needs to be done is Neuropsych testing. I've gone over this one in many a post-- but what this test does is eliminate the depression issues as the primary diagnosis.

Yes, most of us have to deal with clinical depression. When your health, life, marriage, careers, jobs, relationships, finances, are all turned upside down-- you will be depressed. Also, with the pain and disruption of our sleep cycles due to illness- you become depressed. The other component is that sarcoidosis screws with our hormones and pitutary glands, blood sugars- (as well as the meds they treat us with do the same)-- you end up with depression. Depression is the easiest part of this disease to deal with.

Neuropsych testing uses different tests - memory recall, short-term memory tests, geometric puzzles, hand-eye coordination tests, personality profile tests, all which require a different part of the brain to complete the task. If you have brain impairment, dementia resulting in short-term memory recall, vasculitis or have had or are having TIA's or strokes-- then these tests can show that the signals aren't working correctly, and all those "subjective" complaints we have-- are real!

With vasculitis, with TIA's, with hydrocephalus or encephalitis (brain swelling)-- then you can have a clear brain CT or MRI. But if that's the case, these tests can show if there is damage that may not show up in the CT's.

The fact that your MD's don't want to have the insurance pay for these tests is crap. You said you have pulmonary involvement. A simple bronchoscopy can give them proof that this is sarcoidosis. Even is you don't have active disease in your lungs at the present time, you will still have scarred tissue that will show that you have sarc. They can biopsy it, and then you have a firm diagnosis.

I know you're embarrassed about calling the Rheumi back-- but ya know, you pay them to help you. It's ok to tell them that yep, you're emotional over this-- as you know that there is something wrong-- and you feel as though he's leaning towards a depression- mental diagnosis-- and you know that you're dealing with alot more than depression.

This is raw frustration and anger over not being taken seriously.

[Guest guest]

I think this neuropsych testing will end up being ordered somewhere along the line. My pulmonary involvement is actually the one area where my sarc is in remission. My medialstinal lymph nodes were enlarged and I had sob and cough when I was first treated with pred. Those are gone now and Thank God, have been for 5 years. So, not a place for testing. I actually have a brother who works at Deborah Heart and Lung here in Jersey and could have gotten this done for me with a great team. However, not knowing I should have it performed and a doctor who didn't think it was necessary, well, sucks now because of lack of tissue confirmation.

Bonnie B