Myasthenia gravis (MG) is a rare autoimmune disease in which the body produces antibodies against the receptor that transmits chemicals from the nerves to the muscle. It is believed that these antibodies are produced by the thymus gland, and often excessive lymphoid tissue (similar to that found in lymph nodes) are found in the thymus glands of myasthenia patients. (Lymphoid tissue consists of cells that produce antibodies). Celebrities sometime define rare disease to the public. In this case, Aristotle Onasis (Jackie Kennedy’s second husband) suffered from it and in fact eventually died from it's complications.
Debbie is a patient who was diagnosed with MG in 2001 at the age of 41. She has kindly given me permission to use her first name. She was getting frequent infections and suffered from increasing weakness. Her primary doctor referred her to a neurologist, who did a series of tests including the tensilon test; and myasthenia gravis was diagnosed. She was treated at various times with prednisone, immuran, and mestinon, with some positive results.
From early on she suffered from intermittent double vision, common in MG. She wasn’t able to drive because of her fear of suddenly getting the vision problem. This greatly affected the quality of her life.
She was first seen by me in November, 2008. I told her at that time there is no medical research on MG and vitamin D, but many other autoimmune diseases are benefited by vitamin D, and the positive effects of vitamin D on the immune system in other autoimmune diseases have been studied.
Debbie’s vitamin D level then was 22 ng/ml. I convinced her to take a significant dose of vitamin D and her level increased to 64 ng/ml on July 15, 2009. She noticed improvement in her symptoms within a few months of starting the vitamin D. In a stunning development, the double vision that had plagued her for 7 years was gone and has not returned; she has been able to resume driving. She noticed a decrease in her frequent infections and increase in muscle strength. In general she felt much better. Her dose of prednisone was cut significantly because of the improvement. However she then decreased her vitamin D dose, her level dropped in a few months to 57, and she noticed the beginning of the return of many of her symptoms. In January, 2011, I saw her again and encouraged her to increase the dose of her vitamin D to maintain a level that approaches what I call the “lifeguard level.” (Full time male lifeguards in August frequently have levels of 60 to 80 ng. or even higher.)
I have reviewed MEDLINE and done internet searches and cannot find any research that has been done on vitamin D and myasthenia gravis. If anyone who is reading this knows of any, please let me know. I have gone to patient support web sites and have found many patients blogging that their vitamin D level was extremely low (10 to 20 ng./ml seems to be common), but most of them take small doses of 1000 to 2000 units a day in an attempt to correct it, and many have a hard time raising their level significantly. One lone woman noted on the blog that since taking vitamin D, her double vision stopped and hasn’t returned over many months.
It is felt that myasthenia involves an ongoing antibody reaction and the damage to the muscles could be reversible if the antibody production can be stopped. The evidence indicates that vitamin D affects the immune system in a beneficial way, and can prevent the body from producing cells that attack itself.
A study of treating MG patients with significant doses of vitamin D and measuring their muscle strength with objective tests needs to be done. Whether this will be done in 1 year, or 20 years, I don’t know. MG patients shouldn’t wait. In the mean time, Debbie’s quality of life has increased and her need for some medications that cause significant side effects has decreased. I cannot find any report in medical literature that a person with MG took vitamin D not only to prevent osteoporosis but to see if there was a positive effect on the MG.
I will be posting this link on various patient support web sites for myasthenia gravis. I thank Debbie for allowing me to post her story in order to help other myasthenia gravis patients.