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Sarcoidosis

Confused and on the edge

03/03/2009

Question:

Someone please help me!!! I am at wits end and feel as though I am going to end up in the loony bin-LITERALLY! Two years ago, I was walking down a flight of stairs when all of a sudden this big explosion went off in my head. For a second, I thought someone had actually clobbered me, only to find myself to be extremely confused and dizzy. I got a hold of myself somehow and then thought I had either had a stroke or an aneurysm. Needless to say, the squad was called, went to the ER and had a CAT Scan done which turned out to be Negative. I have been through an array of tests: 2 Cat Scans, 1 MRA, 2 Spinal Taps, EMG, EEG, Trans Cranial, Carotid Dopller and 2 MRIs. They did find two lesions on my MRI and had checked me for MS, but they found nothing. I have been tested for Lupus, RA and a variety of other neurological diseases but again - NEGATIVE. I asked my doctor maybe if it was a tumor, but he reassured me it was not a tumor. I went from May 2006 to October 2006 of feeling this pressure in my head. Felt better from October 2006 until January 2008. From January 2008-April 2008 I was sick again. Then from April 2008 until January 2009 I was okay with a few occassional migraines. However, the pain in my head has intensified and it seems like the only time I am feeling good is when I am sleeping. Occassionaly, I still get that pressure build up on the bottom right side of my brain and now it seems to be traveling to the left side. Now I am getting massive massive strange headaches that differ from my normal migraines. They come out of NOWHERE, last for about 30 seconds and go away. They come back several times a day or maybe not at all. The only thing that is puzzling me is that, I had a complete line of bloodwork done and everything came out negative EXCEPT my Ace Serum Test which was slightly elevated. I read that the Ace Serum is a test they run to test for Sarcoid, but I had a chest x-ray done and it was completely normal. My primary care doctor says she thinks they are just really bad migraines, but I have to say, the feelings in my skull that I have been having lately feels like anything other than a migraine. It just does not feel right. She has me on Zomig 2.5 mg. I think I am going to die young and I have the most handsome little Italian ten year old son and I am frightened to death of having something happen to me. It was not until I went to my neurologist that I had bloodwork done and found out the results on my ACE Serum. The doctor said we would just have to watch that a little more closely. With that being said, the last time I went to my neuro doctor he asked me, "So, how are you doing with the Sarcoid"? HELLOOOOOOOOOO - I was never told I had this disease. He just told me we would have to keep an eye on things and maybe repeat the levels. Needless to say, I am probably going to be getting a new neurologist. I appreciated his thoroughness however of all the tests he had ordered. Please someone just tell me what they would recommend. I am not asking for a diagnosis on this thing, nor am I asking for sympathy, just some REAL expert advice.

Answer:

The serum ACE level is not a diagnostic test for sarcoidosis. This test can be elevated in other conditions and may be low in patients with sarcoidosis. Thus, I would not place too much emphasis on this test result.

This being said, sarcoidosis remains a possibility, even if the chest x-ray is normal. A thorough review of all test results would be necessary to do justice to the efforts of your doctors.

Because the diagnosis remains obscure, it would be reasonable to seek another opinion. This can be done most effectively when your current doctors are engaged in the process, including sharing the available test results to avoid repeating expensive tests.

For more information:

Go to the Sarcoidosis health topic, where you can:

Response by:

Elliott D Crouser, MD Elliott D Crouser, MD
Associate Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University