Surviving Sarcoidosis Battles and Forging Ahead Without Answers

Getting out of bed in the mornings has become an adventure. Even if I remember to guzzle water and rise slowly to prevent the onset of lightheadedness from my postural orthostatic tachycardia syndrome, there’s my trick leg to deal with.

Several months ago, my left leg began checking out from its duties and going numb from the knee down. On the mornings when I forget to take the numbness into account, I nearly take a tumble when my foot hits the floor.

This month, I traveled to the Cleveland Clinic for answers, but like many of the symptoms that I live with as a result of my sarcoidosis, I was given a good news, bad news report. The good news is that an electromyography (EMG) revealed no abnormalities. The bad news is that they have no idea why my leg goes numb. So the numb leg, like many other symptoms, will become just another “new normal” in my health story. 

Thankful, but frustrated

Sarcoidosis has been carving its unpredictable path through my life for nearly two decades, leaving multiple unexplained symptoms in its wake. My fatigue has stubbornly persisted whether the disease is active or in remission, a symptom shared by an estimated 50-70 percent of others with sarcoidosis. Muscle and joint pain, cognitive issues, and random numbness of various other body parts also refuse to budge from my wheelhouse of symptoms — which also fall in the “good news, bad news” category when causes are pursued.

Muscle cramps in my feet, legs, and hands have worsened recently — I haven’t experienced this level of symptoms since I took courses of prednisone. During my EMG, multiple charley horses stampeded into my calves, as if deciding that flexing those muscles with a needle stuck in them wasn’t sufficiently uncomfortable. I’m thankful that the diagnostic tests didn’t show abnormalities. But it’s frustrating when answers can’t be found for the various symptoms that have become a part of my daily life.

Living without answers

When readers leave comments seeking answers to their own battles with sarcoidosis, I wish I had responses for them. Despite my lengthy battle with the disease, I’m no more knowledgeable about where it’s headed or what it will bring than when I received my diagnosis. But I am encouraged; we may not have answers, but we are still here.

We are surviving and battling, whether we have just stepped into the ring or have been going rounds with sarcoidosis for 20-plus years like some readers. I hope that we can learn from each other through our shared experiences and find answers to the many questions currently eluding our doctors. 

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to sarcoidosis.