Rachel Pegram, 38, of Charlotte, N.C., shares her experiences and advice after 25 years of living with MG
I never expected that my life would change at 13.
It was at age 13 that I got a bad case of chicken pox. Shortly thereafter, my arms and legs started not working right. I couldn’t climb the school bus stairs or lift my arms to brush my hair. In 1988, after a bad tumble down the school stairs because my legs gave out on me, my parents took me to see a neurologist.
We did not understand what was going on, as I had been active all my life. I had spent a lot of time camping, biking and hiking in Northern California and Oregon. All of sudden I couldn’t do it anymore. The neurologist thinks the MG came out because of my bad case of chicken pox. [Editor's note: An immune response to an infection can sometimes get out of hand and become an autoimmune disorder, such as MG.]
The neurologist diagnosed me with myasthenia gravis using a Tensilon test and blood work. [Editor's note: During a Tensilon challenge test, the drug Tensilon, which prolongs the nerve-to-muscle signal at the neuromuscular junction, is injected into the patient. Immediate improvement in muscle activity indicates a diagnosis of MG.]
I was one of the lucky ones to be diagnosed right away — many people go years trying to get a correct diagnosis.
In myasthenia gravis, antibodies will block, alter or destroy my receptors for acetylcholine at the neuromuscular junction, which prevents my muscle contraction from occurring. These antibodies are produced by my body's own immune system. My immune system is attacking itself. Heat, stress and infection all can cause my body to go into a crisis with MG.
At 14 years old, I had a thymectomy, a procedure to remove my thymus, with the hopes of remission someday. I have a large scar going down my chest that I was very insecure about during the high school years and covered up as much as I could. People who saw it always thought I had heart surgery.
The next few years after my thymectomy went pretty well. I took Mestinon Timespan three times a day but had occasional flare-ups, one of which landed me in the hospital when I was 16. They put me on prednisone then. But I had a pretty normal high school life: I played volleyball on the beach, surfed and walked to school. However, my health started to go down during my senior year in high school, and I ended up having to do my most of my senior year on home study.
I went to community college in the fall and that Christmas I experienced my first severe crisis, which landed me on a ventilator. I spent Christmas and New Year’s Eve in the hospital getting plasmapheresis and was started on Imuran and high doses of prednisone. Prednisone inhibits the immune system, limiting the antibody production. Plasmapheresis is a procedure in which your blood is routed through a machine that removes the antibodies that are blocking the transmission of the signals from the nerve endings to the muscle receptor site. This worked well for me at the time, and I would get it every six months for five days in the hospital. [Editor’s note: See Facts about Plasmapheresis for more information about this treatment, which was developed for MG and several other autoimmune diseases in the 1970s with MDA support.]
I got married and moved from California to Arizona and they did not have plasmapheresis where I lived, so we did IVIG. With IVIG you get fresh antibodies infused for a certain number of days each month. [Editor's note: IVIG, or intravenous immunoglobulins, are antibodies taken from pooled blood donations that are infused into a patient with an immune system disorder; they sometimes "redirect" the immune system.]
After switching from Imuran to Mestinon, I had two wonderful boys, one in 1999 and one in 2002. Both are miracles to me because doctors strongly advised me against ever having children. [Editor's note: Imuran is an immunosuppressant medication that is contraindicated during pregnancy. For more, see Medication Complications for Pregnant Women with Neuromuscular Disease, and Great Expectations: Pregnancy and Childbirth with Neuromuscular Disease.]
I started CellCept after having the boys. CellCept is an immunosuppressant that gave me a lot of good years without a lot of flare-ups. I won the Spirit Award in the Mrs. Arizona pageant, where I used MG as my platform and was able to spread awareness and start a support group for Northern Arizona which lasted a couple years.
I moved to North Carolina in 2003, divorced shortly afterward and remarried in 2008. Presently, I am on Cellcept, prednisone, Mestinon, Mestinon Timespan at night and IVIG every three weeks. Prednisone, which I have taken for more than 22 years now, helps me breathe but also has very rough side effects. It has caused weight gain, steroid-induced diabetes and glaucoma. I cannot say I have ever gone into remission without drugs, but I believe I have been in a drug-induced remission. I have spent a lot of time in hospitals for IVIG treatments for crises.
The hard thing about this disease is that you can be OK one moment and completely weak the next. It changes moment by moment. Small things can send me into a crisis. MG is not always apparent to the outside world, and you can be misunderstood by a lot of people. Many people have no idea there is anything wrong with me, then they will see me in a wheelchair and ask, “Weren’t you just walking OK the other day?”
I cannot emphasize how important it is to have a support group that understands what you are going through, whether it is a local group or an online group. Connecting with people that you can relate with, ask questions of and have general support from is so important when dealing with any illness. [Editor’s note: Contact your local MDA office to learn of support in your area; online connections can be found on MDA’s Facebook page.]
If there is a support group for caregivers available, that also can be very helpful for loved ones that have to walk this journey with you. Sometimes we forget how tiring and hard it is for them in many aspects. [Editor’s note: MDA’s myMuscleTeam is an online caregiving coordination tool that helps you and your primary caregivers request, schedule and manage help from your personal “muscle team” of friends and family.]
Being diagnosed with a chronic illness brings you through a grieving process of sorts. It’s OK to find a counselor and talk through all the feelings and emotions that you are going through.
It also is very important to be proactive in your health care. A lot of doctors and nurses do not know what MG is and do not know how to treat a myasthenic crisis. I have run into this numerous times in the emergency room and often have had to tell the doctors what the best treatment plan is, and they will call my neurologist and run it by them.
I recommend putting together a notebook that includes the medications that you take, medications to which you are allergic, emergency phone numbers and info about MG. In addition, keep an emergency card with you at all times that has info about MG and your medications, just in case you are out and need help but can’t talk or breathe. The heat is very rough for me during the summer, so I always keep an emergency pack of ice and cold water to use if I get overheated.
Ask questions of your doctors. Keep updated on all the different treatments. Finding the right combination of treatments and therapy will greatly help you. [Editor’s note: MDA clinic teams are experienced in managing rare neuromuscular disorders such as MG. In addition, monthly news summaries from MDA’s Quest magazine keep you up to date on the latest advances in MG treatment and research.]
I use a wheelchair now so I can do more activities with my boys. I ask them to help me around the house. I can say that my having a major illness has helped my boys learn compassion and caring for another human being, and to never judge a person by what may not be seen on the outside.
I have learned not to overdo it and to pace myself even if I’m having a great day. It’s OK if everything doesn't get done.
There have been a lot of struggles in my journey with MG, but there also have been a lot of victories. I do not let MG define me.
I may have MG, I tell people, but MG does not have me.
MDA is committed to finding effective treatments for MG and to improving quality of life for people with the disease.
To learn more about MG research, medical management and more, be sure to check out MDA's myasthenia gravis resources: