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Hi, My husband has been diagnosed with Cardiac/pulmonary Sarcoid 3 years ago. For the past 2 years he has had" body tics" especially when he is tired. His head jerks to the side and often he makes a noise. He has been put on clonidine which has helped slightly. The neurologist refuses to think that this is sarcoid related and has decided that he has tourettes (he is 45) What are your thoughts? Thank you


Dear Madam,

It is not uncommon for sarcoidosis to affect organs other than the lungs, as is the case in your husband. The heart and brain are among the organs most difficult to access in terms of diagnostic confirmation of the disease. 

Sarcoidosis of the brain (neurosarcoidosis) can manifest in many ways, depending upon which part of the brain is affected and how much inflammation is present. In some cases sarcoidosis can present like a stroke or brain tumor with headaches and localized loss of neurological function (numbness, weakness) or even seizures. Some patients with sarcoidosis of the brain can develop altered mental status (hallucinations, schizophrenia) or changes in hormone production. Thus, neurosarcoidosis can be easily mistaken for other conditions. 

"Body tics" (muscle fasciculations) are rather non-specific and can relate to any number of conditions other than sarcoidosis (drugs, electrolyte disorders, endocrinological defects, nerve or muscle disease, etc.). As such, your husband is advised to seek professional evaluation, beginning with his primary care physician. If neurosarcoidosis is suspected, high resolution imaging of the brain and other tests (lumbar puncture to obtain fluid from around the brain) may be indicated. 

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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