my NS dx story

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Janet, was this the esteemed Dr. Wilkes who told you that you didn't have sarc? A big Uuuuuuuuuuffffffffffff! to him.

Okay, I'll try to be concise. 1994: I was diagnosed with sarc by a biopsy of enlarged hilar nodes, seen on a chest xray. Lungs clear, no symptoms, no follow-up recommended. Forgot it.

1999: within 6 month period, lost hearing in both ears & had a Bell's palsy. All blamed on viruses.

2000 (one year later): sudden onset of severe fatigue, muscle weakness, weird misc. symptoms (itching eyes, felt like cobwebs on face). Tested for mono, Lyme's, RA, MS, bunch of other stuff--all negative. Told by family doctor I had a virus. Within a few months had tremors, balance problems, another facial palsy, severe facial pain (trigeminal neuralgia). Saw neurologist who strongly suspected NS. More tests like spinal tap, EMG, those conduction tests (Baer? something like that?), serum ACE, & more. Guess what? All normal! Protein elevated on spinal tap, but neuro said it was not significant. He also said that the fact I had been taking an ACE inhibitor for years for my blood pressure would not affect the test. Later Baughman said that it definitely could affect the ACE level, but ACE levels aren't elevated in all sarc patients. Baughman also said that he considered the elevated protein significant. Anyway, I have never had an elev. ACE, but because I've had two biopsies positive for sarc (lymph nodes & lungs) and no other cause found for neurological symptoms, I have been diagnosed with NS. Oh, all of my MRI's have been normal, according to the local radiologists, although Dr. Stern in Atlanta identified an abnormality in the brain stem on one of the films. Baughman also told me that NS can be very difficult to identify on MRI's, especially when it attacks the cranial nerves, which it has an affinity for. He did a study of people with Bell's palsy, looking specifically for the 7th nerve, & they only identified a small percentage of patients.

So, except the elevated protein on spinal tap & Stern's opinion of one MRI, all of my tests have been normal! Yet my local neuro, Dr. Lykens from IU, & Stern & Baughman (both with extensive experience with NS) all say I have NS. Even my pulmonologist said it, from the beginning.

Sorry for such a long note, but it's actually pretty brief for me! Hope this helps.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: frustration!!!!!!Date: Mon, 20 Feb 2006 23:37:39 -0000Hi Y'all,O.K. before I go into great detail I want to read all of your DX stories. How did you all know you had systemic sarcoidosis or neurosarcoidosis? Today.....to make a long story short.....Since I was DX 5 years ago I have been trying to figure out my neuro symptoms. I was being worked up for MS then my ACE numbers elevated and my lungs became sick again in the summer of 05--and all my neuro symptoms. I was not happy with my original Dr. and so I sought out an "expert" in field of sarcoidosis. Today when I saw him...he told me I did not have sarcoidosis and there was nothing else he could do for me. He said my ACE markers went down and my PFT (pulmonary function test) are normal---and so my symptoms could not be sarcoid related. Now if that is true--I am O.K. with that....but I don't believe it. So, can you have neuro sarcoid and have normal ACE levels? Please tell me your stories...I could use some "Your NOT crazy"---but maybe I need to look at something else.Thanks,Janet~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database