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Myasthenia Gravis Central Texas Support Group

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Home Our Personal Stories This Is My Story - Donna Clark

This Is My Story - Donna Clark

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My name is Donna Clark and I am 39 years old. I was diagnosed with Myasthenia Gravis in May of 2003 when I was 34 years old. Here is my story.

It was the beginning of a new year, 2003. I was at a good place in my life. I was an RN working in a pediatric unit at Fort Hood Texas. I had just been promoted a few months before to Nurse Manager of the unit. Along with the promotion came many more responsibilities. I was attached to a beeper 24/7. I had a son, Chant, who was 14 years old, and now in High School. My husband Ron was very successful at his job. He was a defense contractor also working at Fort Hood. Then, the Iraq war began. Ron would be deploying with the troops.

We had been down this road before. During Desert Storm, he was Active Duty Army, and we lived in Germany. We had prepared ourselves for the difficulty his absence would bring. Now, in addition to working and being on call 24/7, I had to take care of everything else. Chant was very active in sports; the yard had to be mowed; the bills had to be paid; the dogs had to be taken care of. So, when I started feeling weak and tired, I chalked it up to the fact that I was overloaded.

I began having trouble with my vision. At night, as I stayed glued to the news, my eyes would droop, and I was having double vision. I would put my hand over one eye, and that seemed to help. I hadn't had my eyes checked in a year or so, so I went to the ophthalmologist. My eyes were good! The next weekend, my son and I were doing the yard work; as I stepped up into the shed to grab the weed eater, I fell. My legs were really weak. It scared my son, so I told him I would go to the doctor. I told my PCP (Primary Care Physician) what I was going through. He told me I was probably just "Depressed" since my husband was gone, and I was so busy. He wrote me a prescription for Effexor that I did not fill.

A couple of weeks went by, and one night while my son and I were sitting at Sonic eating, I noticed I was having a very difficult time chewing tater tots, and it was nearly impossible to swallow. I didn't want Chant to worry anymore, so we left, and went home. When we got home, I took a shower. I couldn't hold my arms above my head to wash my hair! I felt soo tired. I knew something was wrong. I was trying to dry my hair, but couldn't hold my arms up. I had to sit on the toilet, and brace my elbows on my knees, and flip my head upside-down to dry my hair. This became a part of my everyday routine!!

Being and RN, I did much research on the internet. I found out all of my symptoms fit with the diagnosis of Myasthenia Gravis. Armed with this information, I went back to my PCP for the third time, and INSISTED on a neurology consult. I think he referred me just to please me, and get me out of his office. Good thing, because my neurologist, Dr. Colon, diagnosed me right away, pending testing. The antibody tests were positive. I went through CT Scans, EMG and nerve conduction tests. At this time, I was extremely weak, and was told to take some time off of work. I was having a hard time holding an IV needle at work. How can I work if I can't hold the needle to start an IV on a child?? My work was wonderful, and let me off. I began the Mestinon and it seemed to help. It, however, is only good at treating the symptoms, and not getting at the root of the autoimmune response. I started on Imuran. Prednisone was not an option for me at this time; I had been diagnosed at 28 with premature menopause, and had bone density studies done that suggested I had osteopenia in my hips. Prednisone would only worsen that, so we decided on Imuran. It made me very ill. I couldn't keep anything down. I was also started on IVIG treatments. I had a LONG battle with my insurance company to be able to get the treatments, so I was very excited when I finally started the infusions. It started out every day for five days, and then once a week. It made me feel so much better. I got headaches after infusion, but I was stronger.

Meantime, my husband was brought back from the war to help take care of me. Thank God!! I really needed him at this time. I was angry! I was a young woman with a wonderful career, husband, and child, and now THIS!!! The IVIG infusions were becoming less effective after time, so after much discussion, Dr. Colon suggested that I have a thymectomy. Of course I was apprehensive, but I went to see the cardiothoracic surgeon, Dr. Myer, in Dallas at Southwest University Medical Center. He put me at ease, and in February of 2004, I had a transternal thymectomy. This was no easy surgery, as my sternum was cut open, and I was wired back together. I was home in three days. I was told it could take up to two years to tell whether or not it was successful.

I tried returning to work six weeks after my surgery, but was unable. Dr. Colon put me on long term disability and was now trying me on Cellcept (another immunosuppressant). As long as I was on this, I couldn't return to work as a nurse in a hospital setting. This drug suppresses the immune system, and I would end up getting worse, being around sick people. GREAT!! Now I've lost part of who I am!!!

At this point in my life, MG had ME! I didn't want that! I kept telling myself, "Things could always be worse!" I decided to get involved with other things, and keep myself busy other ways. After all, I had to take a nap everyday in the afternoon just to function. Maybe this was a blessing?? The Good Lord works in mysterious ways!

It has now been four years since my thymectomy. Looking back, I can tell it worked. It was either that or the Cellcept or a combination of the two. I now see MG as a blessing. That's right a blessing! I was able to spend time with my son during his high school years, that I wouldn't have had I been working. I went to every football game, baseball game and track meet he was in. I was the chairperson for his Project Graduation. I was able to spend quality time with my husband when he was home. I was able to visit my mother and sisters when I wanted. We became host family for two foreign exchange students. We had John from Brazil for 10 months, and then we had Lara, from Germany for ten months. They are now part of our family! I have the BEST FRIENDS EVER!! They helped me through it all, and still remain with me today! I now am able to exercise every day on the treadmill. I went to Hawaii with my husband for two weeks, and went parasailing and skydiving over Oahu! I remain on Mestinon, 180mg twice a day, and 60mg up to four times a day as needed. I continue on Cellcept 2500mg/day. I still have MG!! But guess what??? IT doesn't have ME!!!