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Monday, May 4, 2015
My son(23) has been diagnosed with this after about a year of various symptoms. He even got his tonsils removed when it is possible that this was not necessary. I want to know the best way to tackle this disease, what type of diet, what is best to hope for and what questions and or tests that we need to discuss with his doctor? What doctor is best for this type of disease, and are there any resources for persons with this disease?
I can tell my son is beginning to be overwhelmed, because for the past year he has been in/out of doctor`s offices trying to determine what is wrong. Please help us.
Polymyositis is another autoimmune disease, like myasthenia gravis.
In this disease, the immune system attacks the muscle itself, rather than attacking the nerve-muscle connection. The disease can be characterized by weakness and muscle pain, but can also have problems with swallowing.
The weakness, like myasthenia, is predominantly in the hips and shoulders. People suffering with this can have problems rising from chairs, rising off the commode, going up and down stairs, and lifting overhead.
The disease is treated by turning down the immune system with medication (and possibly infusions) to stop the immune system from attacking his muscle. This usually means long term drugs and dealing with the side effects of drugs (lowered immunity, potential for hypertension and diabetes, potential for mood problems, just to name a few).
You need to be able to discuss what to do with disease modification (turning down the disease) and how to deal with symptoms of weakness, pain, swallowing, breathing until the disease is turned down.
There is no one diet that improves polymyositis. If the doctors are using steroids to turn down the immune system, then a low carbohydrate diet would be more helpful, especially low on sweets and sugars. Neurologists who specialize in neuromuscular diseases and rheumatologists are the best doctors for this disease.
If your son carries a diagnosis of polymyositis, the Muscular Dystrophy Association has clinics in most major cities where you can seek specialized care and find help. Visit http://www.mda.org/to learn more and if you need to find a clinic, you can visit http://www.mda.org/locate/
Also, you can use the National Institute for Neurological Disorders and Stroke page at http://www.ninds.nih.gov/disorders/polymyositis/polymyositis.htm
Robert W Neel, IV, MD
Assistant Professor of Neurology
College of Medicine
University of Cincinnati