Guest guest Posted April 16, 2009 Report Share Posted April 16, 2009 Welcome Eddie and sorry to meet this way,, but you have found a wonderful group to lean on. We all know what you are going through. Your history sounded a lot like mine at first.. i had many years of severe headaches, and somewhat normal test... so I went mis-dxd for 5 years. Than as the NS progressed than the blood work and mri of my head and other organs started to show lesions. and I had the drooping of my face also. my late husband kept telling the dr's that someone who gets a migrane does not get a droopy face and blue lips and fast heart rate.. etc.... but i was told to grow up and it is just a headach. and a headache will not kill you!!! Well i went on the search of my own and found a great chief of neuro at Hershey Medical center in Hershey Pa. and he looked over my history, did 3 spinal taps... every kind of blood test for autoimuune disease.. and lung function test and all came back pointing to NS' That was 2001. at that point i was on steriiods everyday very high doses and i did not do well,, the neuro said i was toxic.. he put me in hospital an weaned me off the steroids and got me started on Imuran, plaquneil, and elevil, and pain patch duragestic.. after 3 months of Imuran my wbc went back down to normal.. until than it was i want to say 1600 or something so drastically high.. so he knew he made the right dxd. over the past 7 years i had my bouts with illness and severe headpain that i would have to go to the ER for a shot for the pain,, but i was stable.. until this past nov.. than i ended up crashing and was inpatient for a week and at home on Iv steroids at home 4 times since nov.. till my wbc bottomed out 3 weeks ago to less than 1.0 . When my neuro got the new rheumy she stoped the imuran and let my wbc recover.. i was at the ER Monday for severe pain in head and the er dr said when he looked behind my eyes my one eye was buldging.. and my head rate was to fast.. so they gave me pain meds and something to slow my heart rate and sent me home when he felt i was ok.. The Rheumy started me this week on Cellcelpt instead of the imuran again.. so i will see if my body can stand the Cellcept .. and weaning down off the steroids again.. OK that is enough ..lol there is so many ways this NS can effect you I could go on and on... Many Blessings A. Hello folks. My name is Eddie, from Georgia. I am 42 and have suffered from recurring bouts of headaches that have become chronic. Finally, I found a great neurologist who was determined to help me and ran a whole bunch of tests, as usual everything came back normal except that I had a very high angiotensin converting enzyme level. I am having nystagmus as well as a palsy on one side of my face that seems to be getting worse over time. The doc seems convinced that it is sarcoidosis and is re running the blood and has sent me for a chest xray. I am glad it finally has a name but don't know what the future holds. Would love some feedback. God BlessSent from my iPod Great deals on Dell's most popular laptops - Starting at $479 Quote Link to comment Share on other sites More sharing options...
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