Rare disorder has limited treatment options

Dear DR. Gott: About a year and a half ago, I was diagnosed with NMO, or Devic’s disease. I have a mild case so far. It started with shingles and morphed into the NMO. My left side is numb, with my left hand hypersensitive. The right side of my neck is what bothers me. I cannot get it, my hips and shoulders to stop aching. The treatment for NMO is steroids, and I am also on Imuran.
There isn’t much information on NMO/Devic’s. Do you have any idea how to treat this kind of pain? Any natural pain alleviations?
Dear Reader: Devic’s disease, also known as neuromyelitis optica (NMO), is an unusual form of multiple sclerosis (MS). The immune system attacks the optic nerve and the spinal cord. The cerebrospinal fluid in NMO sufferers is different from those with typical MS because of its large number of white blood cells and other factors. This is beneficial during the diagnosis process in differentiating the two disorders.
Symptoms can include numbness, weakness, loss of vision and bladder and/or bowel problems.
There is no cure available, and treatment is somewhat limited; however, research is ongoing. Currently, steroids and plasma exchange are the best options. For some patients, the regular use of steroids may be necessary, and relapse may occur when the steroids are tapered off and discontinued. For those not helped by steroids, plasma exchange may be considered. Imuran (azathioprine) and mitoxantrone (Novantrone) may also be helpful. Standard MS therapies have not been proven to be as effective in NMO.
You may benefit from practicing relaxation and breathing techniques, yoga, tai chi, water aerobics and other gentle, stretching exercises. Perhaps acupuncture or acupressure may be beneficial. Be sure to speak with your doctor about this before undergoing any exercise or alternative therapy. This is important because, in some cases, certain activities can cause more harm. If you experience improvement, your physician should also be aware because changes in dosages and medications may be appropriate.
To provide related information, I am sending you a copy of my Health Report “Managing Chronic Pain.” Other readers who would like a copy should send a self-addressed stamped No. 10 envelope and a $2 check or money order payable to Newsletter and mailed to Newsletter, P.O. Box 167, Wickliffe, OH 44092-0167. Be sure to mention the title or print an order form off my website at www.AskDrGottMD.com.
Dear DR. Gott: Several months ago, I saved a column about a boy who seemed intent on destroying family relations. Surprisingly, you replied with a diagnostic name — a combination of letters like CDD or something. I would love to do more research on this, but I have lost the article. Can you please help me?
Dear Reader: I believe the mother of a boy with ODD (oppositional defiant disorder) sent in the article to which you refer. I cannot take credit for making a diagnosis because she provided it, but I was looking for more answers about what to do to help her son and the rest of the family.
You can read the article again on my website at AskDrGottMD.com/odd-causes-family-unrest/. You can also learn more about on the disorder at the Mayo Clinic website (www.MayoClinic.com/health/oppositional-defiant-disorder/DS00630) or the Medline Plus website, which is part of the National Institutes of Health (www.nlm.nih.gov/medlineplus/ency/article/001537.htm).
If you think your child may have the disorder, speak with his or her pediatrician about getting a referral to a child psychiatrist, who can evaluate the situation and determine whether there is a behavioral/psychological cause.

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