Re: Hello and questoin from a newbie, DEBBIE

[Guest guest]

Debbie,

Hi My name is and i am 39 i was DX with Neurosarcoid 2001. But was ill for about 10 yrs before that.

They did every kind of tests and most were normal except my WBC was 16000 for 5 yrs straight.

The final dx tool was a spinal tap. And a great Neuro dr and Rheumy. ,, before that i was told i had Lymphoma, adreanl tumor witch i do have but was not over acting..

i had and still have severe head pain, so bad that i had to go to the Dr's or the ER for a 150mg injection of demoral to relieve the pain. i was even put on a morphine drip at times. my heart at times will go approx. 178bpm without meds to control my heart rate. i have sarcoid in my liver, spleen, lungs, brain, spinal cord, i have Restless leg syndrome.i have severe arm and leg weakness, so bad that at times it hurts to just fold laundry, or even walk somedays. On top of the Sarcoid i have Central nervous system vascultitis. but that is 2nd dary.

I have perment short term memory loss, and severe cognititve problems. I go to cognititve theraphy every 3-4 months for 3 hrs at a time.

Well that's a short verison to some it up..

Good luck..

Blessings and a pain free day for your son.

in Pa