"But You Don't Look Sick"

I have been frustrated by the reduced feeling in my left hand lately and the tremor in my right. I have decided that there is nothing that alarming about either really but trying to type on a keyboard has become a bit of a chore. I am constantly missing keys and hitting the wrong keys, sometimes several at once. This requires constant revising of my text and slows me down. In the past two years I have had several MRIs of the brain and spinal cord, all with the purpose of looking for inflammation or lesions consistent with sarcoidosis. They have all been inconclusive. Several white matter lesions have been found but, I am told, these could be due to normal aging of the brain. The only definitive way to know if they are due to sarcoidosis is to biopsy a lesion but the risks involved in such a procedure far, far outweigh the benefits. After all, I am already being treated, so what would we do differently? So, for now, I have been described as having "peripheral neuropathy, probably due to sarcoidosis involvement". I choose to live with that, refusing any more interventions or scans or offers to do a spinal tap (ugh!). I think that if it ever becomes a major issue that needs more serious intervention then it will become obvious that we need to dig a little deeper.

One of the very, very frustrating aspects of this disease is how difficult it is to diagnose. The symptoms can mimic so many other things. During the early years of the disease process my doctors and I were able to use, among other things, a bloodtest that measures the presence of a certain enzyme, Angiotensin Converting Enzyme (ACE) in the blood to confirm disease activity. It was comforting to me to know that when I wasn't feeling well the bloodtest would reflect that. It helped me to know that it wasn't "all in my head" and I wasn't making it up or looking for attention or all the other things that you have to wrestle with when coping with a chronic disease. It was a nice objective marker. The normal value for such a test is between 7-67. My very first level that helped confirm my initial diagnosis was a whopping 280. Last year the ACE test became less and less reliable dropping down to less than 3 at one point despite some marked disease symptoms. Now it doesn't work for me anymore. Another one of those strange quirks of this disease. My doctor tells me that this tends to happen and noone really understands why. I feel lost without my little ACE crutch though, lost in that sea of always questioning oneself and wondering if my symptoms are real and valid. That can be a very tough place to be, especially when sarcoidosis patients do not always look sick.

I came across a moving video created by the Foundation for Sarcoidosis Research called "But You Don't Look Sick". By the way, that's something I've heard a lot!