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Dear Kaye,

None of these tests are positive for sarcoidosis. The CRP and sed. rate check for inflammation. If these tests are elevated, then further testing should be done to find the cause of the inflammation. Sarcoidosis is usually diagnosed with a tissue biopsy. In my case, I had enlarged lymph nodes in my chest and they biopsied lymph nodes in my neck and found the sarcoidosis.

I'm glad your doctor scheduled these tests, but they are probably only a place to start. You have to start somewhere, or you will never get the help you need. Be sure you get copies of the test results. I did not when I first pursued a diagnosis, and the doctor waited 3 months to tell me my sed. rate was elevated and to refer me to another doctor.

Good luck with future visits!

Debbie C.

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  • 1 year later...
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,

Other tests that you may need to push to have done could be ENG,

EMG, EEG and evoked potentials. All of my early MRI's showed only

things like sinus involvement. When I kept persisting how bad things

were and these tests were ran, lo and behold, doctors started saying

HMMMMMMM, we are really concerned about this. If one doctor will not

help, move on down the road. Good Luck.

Elodia -

-- In Neurosarcoidosis , " jaspergem2000 "

<jaspergem2000@y...> wrote:

> Dearest Aisha,

> I am genuinely confused and need your wise counsel on this matter.

> That I have Stage 4 Sarcoidosis is unquestionably true and

> confirmed. However, despite there being a direct 1:1 ratio between

> neurosarcoid symptoms (an unexplainable severe, throbbing,

permanent

> headache that won't go away, confusion, short-term memory loss,

> inability to go to sleep, difficulty in making even simple

decisions,

> inability to " get started " even when I have important things to do,

> loss of psycho-motor control, changes in personality, extreme mood

> swings, unexplainable weight loss, etc,etc) incredibly my recent

> brain C-Scan findings were " unremarkable " according to my MD! I've

> been an avid student of psychology since 1967, a former Psych major

> in college, and aced Master's level Psych courses, and I KNOW these

> symptoms are not psychosomatic----I AM NOT " imagining " these

> things!!!

> So, dearest Aisha, PLEASE explain to me, scientifically, how all of

> the above can be true and NOT show up on cat scan!?!?!? HOW?????????

> Love,

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