Review: "The Patient's Guide to Neurosarcoidosis" (manuscript)

          There are very few popular and affordable books on neurosarcoidosis, so, when I saw, The Patient’s Guide to Neurosarcoidosis by Denise Sutherland, I picked it up.

            So, what is neurosarcoidosis?  It is an autoimmune disease that I have that takes the good tissue of the brain and turns it into scar tissue called, “granulomas.”

            About five percent of sarcoidosis patients also have neurosarcoidosis.  Sarcoidosis is the more general disease which attacks most of the organs in the body, but especially the lungs.

            About six out of every 100,000 people get diagnosed with it.

            It tends to appear between the ages of twenty and forty and it can go into remission or be a life-long problem.  There are theories about how you might get the disease, but no definitive answer. There is no known cure, but prednisone is the usual maintenance medication for the joint pain and swelling.

            For neurosarcoidosis, the granulomas damage the nerves resulting in many different possible symptoms (11-19).  Mine include phantom smells, hallucinations, seizures, neuropathy, stuttering, misusing words, etc.

            Sutherland explains the tests that can be done to determine if you have sarcoidosis and neurosarcoidosis.

            In the third chapter, she explains the medications that are used for the pain and swelling, as well as all the side-effects of the medications.

            In the fourth and fifth chapters. She looks at the emotional impact of the disease and habits that can help you deal with the disease and what it does.

            The second half of the book is a collection of anecdotes from people with neurosarcoidosis.

            The book ends with further reading (143), a table of abbreviation (146), a glossary of terms (which are in bold type throughout the book, 147), a reference page (154), and an index (157).

            I have done a lot of reading on sarcoidosis, so this book did not add much new knowledge to me.  However, it is an excellent, well-written resource, and I would recommend that everyone who has neurosarcoidosis or a family member with it to buy it and keep it on hand.

[This review appears on my blog, my YouTube channel, Amazon.com, and Goodreads.com.]