Surviving Sarcoidosis Battles and Forging Ahead Without Answers

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. 


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.

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  1. Catherine says:


    I recognized some symptoms. May I ask you if you need oxygen? I have it 13 years now, and my breath is to short to do whatever. I sleep very much, sometimes almost 16 hours . Yes, every day is an adventure, only never a nice one. Something new occurs all the time. Courage to all that suffer from this awful desease.

  2. Kerry Wong says:

    Hi Athena,
    I hate to be another one of those “have you considered …” people, but I’ve been living with symptom uncertainty for about 12 years, diagnosed with Sarc just 4 years ago & soooooo relate to your story. I also get that numbness in my hands & feet (& legs from knee down) – have they considered Small Fiber Neuropathy? It’s fairly common in pts with Sarc, but I don’t think it would show with an EMG – it’s typically diagnosed with a biopsy (a few tiny ones at upper & lower parts of the leg). I had to fight my neurologist to get him to do it, and sure enough the report came back positive. It’s definitely something with at least looking into/talking to your doc about.
    Hope you get some answers … and relief!

    • Athena Merritt says:

      Hi Kerry,
      Thanks so much for reaching out to me. Yes, I had a QSART performed in 2011, which showed Small Fiber Neuropathy and a thermoregulatory sweat test in 2016 which determined the same. I’m headed back to Cleveland this week to follow up on the issue and others.

  3. Doreen Casey says:

    Thanks for sharing. I have many of those symptoms. I wad diagnosed with small fiber neuropathy through biopsies, which is caused by sarc. This is damage to small fiber nerves.

    • Athena Merritt says:

      You’re welcome. Thanks so much for commenting and sharing your own experience. I was diagnosed with small fiber neuropathy as well in 2011. I get numbness throughout my body, not just in the affected areas. I’m headed back to Cleveland this week in hope of answers for that issue and others.

  4. Carrie says:

    My husband is dealing with with this as well. He has pulmonary sarcoidosis. He can’t stand without getting dizzy and at 52 is basically residing to sitting all weekend because of his dizziness. Oddly he had a very surprising stroke in Oct. He took prednisone for 4 months and it pretty much shut his system down – blood pressure super low, cold all of the time (we live in Florida!) and not heart racing when he stands (POTS likely).
    We have a small child and we are trying to get help for him. Anyone relate to these symptoms?

    • Athena Merritt says:

      Sarcoidosis is frustrating because it often leaves us with more questions than answers when it comes to symptoms we experience. I hope physicians are able to get to the root cause of your husband’s symptoms soon. Has your husband had any testing to determine if he has POTS? The dizziness upon standing, low blood pressure, etc. are among the symptoms that I experience which are related to my POTS.

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