The University of Kansas Medical Center MG Clinic was organized in 2002 under the leadership of Dr. Richard Barohn, Chair of the Neurology Department, who at the time was also serving on the Myasthenia Gravis Association Board of Directors. Dr. Barohn is a world renowned MG specialist and MG researcher. His team of Dr. Mazen Dimachkie, Dr. Mamatha Pasnoor, Dr. Constantine Farmakidis, Dr. Vernita Hairston-Mitchell and Dr. Omar Jawdat create a unique opportunity for patients and their families to receive care based on the most current research and treatment methods. An effort is made to schedule MG patients on Tuesday and Thursday mornings so that the Tanya Renner, MGA Program Coordinator- Kansas City, can meet with the patient and family that may attend in the patient’s room. The coordinator offers a personal and less scientific approach to care and support for the patient in their everyday quest to live a more healthy life. The coordinator also helps patients gather their thoughts and concerns so that the most will be made of their physician appointment. This collaborative approach is of great value to patients and offers the kind of support that encourages patients to take control of their health and helps in the management of living with a chronic disease.
In January 2020, the MGA began a partnership with St. Louis University in St. Louis with renowned neurologists, Dr. Ghazala Hayat and Dr. Jafar Kafaie. Both specialize in neuromuscular disease. Additionally, Dr. Kafaie sees pediatric patients at Cardinal Glennon. Meridith O'Connor, MSW, Program Coordinator- St.. Louis sees patients with MG on Tuesdays who come to the clinic. Meridith is also a patient and therefore able to connect with patients on a unique level to provide resources and support.
A specialist in neuromuscular disease, Dr. Michael Schwartzman has been associated with the Myasthenia Gravis Association since 1993. Dr. Schwartzman’s practice is part of Neurological Consultants which is affiliated with St. Luke’s Medical Center and he sees patients at Neurological Consultant’s office in Kansas City on the Plaza, St. Luke’s South and Lee’s Summit locations. This clinic was run for many nearly 20 years by Volunteer Clinic Coordinator, Diana Wilmoth, RN, who served on the MGA Board of Directors for many years and is a person living with Myasthenia Gravis. Diana retired from her role in 2019. Patients in the St. Luke's Clinic are now greeted by Tanya Renner, Program Coordinator- Kansas City. The MGA and Dr. Schwartzman are committed to educating and supporting MG patients and their families who participate in this bi-monthly clinic. This partnership allows for encouragement of patients to become their own health advocates and participate in prevention.
Management of MG varies according to the severity of the disease, your age and the type of myasthenia have. Your neurologist will work with you over time to determine the right treatment and dosage for you.
The most common is Mestinon. Myasthenia Gravis is caused by a communication problem between nerves and muscles and this group of drugs enhances this communication. These drugs can improve muscle contraction and strength.
Possible side effects: Excessive salivation, Frequent urination
These types of drugs inhibit the immune system and limit antibody production. Prolonged use can have severe side effects. The most common prescribed for Myasthenia Gravis is Prednisone.
Possible side effects: Weight gain, Diabetes, Increased risk of some infections, Redistribution of body fat, Bone thinning
These drugs also alter the immune system and include CellCept and Imuran.
Side effects include: Risk of infection, Liver damage, Infertility, Increased risk of cancer
INTRAVENOUS IMMUNOGLOBULINS (IVIg)
This therapy provides your body with normal antibodies. It does have fewer side effects than plasmapheresis, but it can take a week or two to start working. The benefits of this type of therapy normally last a month or two. Side effects, which are normally mild, may include chills, dizziness, headache and fluid retention. Slowing the infusion and using medicines to relieve these symptoms may be helpful.
IVIg might be prescribed for an individual with MG for one of several reasons. The first indication for use might be for a hospitalized patient who is extremely ill and might not be responding adequately to other treatments. Some patients with MG who are being treated with IVIg have improved quickly, thus allowing time for other treatments to begin working. Patients at home who are having significant symptoms in spite of aggressive treatment with other drugs and treatments, may be considered for treatment with IVIg also.
IVIg is thought to be very safe with regard to exposure to infection or viruses. Donors are screened. The processing of IVIg inactivates such infections as HIV and Hepatitis B & C. Nonetheless, it is a human blood product that comes from multiple donors.
IVIg treatments are administered intravenously. The medication is infused slowly over a number of hours. The dose is based on the individual’s weight. Many patients are treated with a series of infusions over a period of three to five days. Other patients may have infusion intervals even farther apart. Patients who are treated with long-term maintenance therapy have a single infusion every few weeks. IVIg is expensive and this can be a major issue in management. It is important to discuss the cost issues with your health insurance provider in order to prevent an unforseen financial dilemma.
This procedure uses a filtering process similar to dialysis. Your blood goes through a machine that removes the antibodies that are causing the blocking of the signal from the nerve endings to the muscles. The benefits of this treatment only last a few weeks. Repeated treatments can lead to difficulty gaining access to a vein, which may cause the implantation of a catheter into your chest.
The procedure usually entails five exchange treatments of 3 to 4 liters each and is carried out over a two-week period. Plasmapheresis is used primarily to stabilize the condition of patients in myasthenic crisis or for the short-term treatment of patients undergoing thymectomy.
For those rare cases where other methods of treatment do not work, plasmapheresis can be used as long-term therapy. Some negative aspects of plasmapheresis include problems with venous access, risk of infection of the indwelling catheter, hypotensions and pulmonary embolism.
The surgical removal of the thymus gland (which often is abnormal in myasthenia gravis patients) improves symptoms in certain patients and may cure some individuals, possibly by re-balancing the immune system. Most neurologists encourage thymectomy for patients with generalized MG without thymoma. Other factors influencing the decision include age, duration and severity of the disease and response to medication. Although no adverse effects have been reported as a consequence of thymectomy in children, it is preferable to delay the surgery until puberty if possible because of the established role of the thymus in development of the immune system. Also, although thymectomy has been advocated for elderly MG patients, there is uncertainty about the persistence of thymic tissue in such patients after the age of 60.
The goal of thymectomy as a treatment for myasthenia gravis is to induce remission, or at least improvement, permitting a reduction in immunosuppressive medication. The mechanism by which thymectomy produces benefits in myasthenia gravis is still uncertain. In general, acetylcholine receptor-antibody levels fall after thymectomy, although there are conflicting reports. On theoretical grounds, there are several possible mechanisms. First, removal of the thymus may eliminate a source of continued antigenic stimulation. If the thymic myoid cells are the source of autoantigen then their removal might allow the immune response to subside. Second, thymectomy may remove a reservoir of B cells that are secreting acetylcholine receptor-antibody. Thus, thymectomy may correct a disturbance of immune regulation in myasthenia gravis.
Health insurance companies do pay for thymectomies. Since there may be questions concerning insurance coverage with specific surgeons and specific institutions, it is a good idea to check with your insurance company as soon as a thymectomy is being considered to make sure that the coverage is in place.