Living with Myasthenia Gravis – Bravelets

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Living with Myasthenia Gravis

Posted on September 27 2012

I don’t think of myself as brave. I am Debbie but Debbie who deals everyday with Myasthenia Gravis. Like your site, not many people know about Myasthenia Gravis and not much research or funding is being done for this autoimmune illness. It is not uncommon and we need to bring awareness for those with MG. Here is my story which you can find on my website:
2006 was a difficult year for my family and me. My brother passed away with a sudden heart attack in June. My father-in-law passed away in July of a massive brain tumor. I quit nursing November 6th due to health problems and my sister-in-law passed away in December.I had symptoms of Myasthenia Gravis (MG) for a few years but contributed it to some other illnesses and working 70 hours a week. I felt it was stress and ignored the weakness in my legs, double and cloudy vision, weight loss (due to difficulty in chewing and swallowing) and shortness of breath. It seemed I was tired all the time, especially at night.When my vision became affected and inserting IV catheters and other nursing skills and paper work became affected, I quit work hoping it was all stress related and go away.I buried my head in the sand and finally went to a local neurologist in 2007 when I was diagnosed with Myasthenia Gravis. Being a nurse, I didn’t know a lot about it and when you are diagnosed with a chronic illness you have to go through the same stages that you go through with a death of a loved one. Well, being a type A person, this was difficult and I had always felt infallible. Also, being a nurse, I felt I was to care for others not them taking care of me.Myasthenia Gravis affects the voluntary muscles of your body. Mine started with weak legs and my vision became much worse. I never had double vision but prism in my glasses have helped and Mestinon helps tremendously. I have a blood disorder (Lupus A Anti-coagulant Positive) which makes you prone to blood clots. I did not know this until we tried IVIg (gamma globulin) to treat the MG. I developed blood clots throughout my whole body. I was put on coumadin but after a year and not being able to regulate it, the hematologist ran a genetic test (CYP2C9) which causes a problem to regulate coumadin (blood thinning pill). I, now, take Arixtra injections daily as I have had 2 more episodes of blood clots. I will remain on this forever. We tried plasmapharesis (this filters the plasma and puts clean cells back into your body) but my blood pressure dropped very low and it didn’t help the MG. I have been on Prednisone, Imuran and Mestinon for the MG since being diagnosed. The Prednisone is a difficult medication for me because it has caused teeth problems, osteoporosis and stomach problems. I have to admit it seems to help and when I try to lower the dose, it seems to flare the MG.There are several antibiotics that cause flares of MG and zithromax caused a flare of mine. I, now, learned that magnesium causes flares in a lot of patients. The MGFA has great information on the illness and medications. The website You can click on the MGFA logo at the top of my site and this will take you to the official MG web page.When I had my thyroid removed in 2009 (due to Graves Disease), the thoracic/cardiac surgeon did a biopsy of my thymus and I had several thymomas and mediastium tumors. Some patients benefit having their thymus removed but it takes a while for this to take affect and it is not an easy surgery. February 8, 2011, I decided to have mine removed. I had a large thymus and my sternum had to be cracked open to get all of it removed. Due to my age (57 years old), my chances of a remission drop to 45 % and it takes a year or more to notice a difference. I am remaining positive this will put me into a remission. If done during the age of 25-35 the chance of remission is 85%.Through my illness all of my loved ones have had a hard time and gone through the same stages that I had to go through. It has not been easy but I learn every day to make the most of each moment and I take time to find something to make myself happy and to make others happy. I have learned that happiness comes from within and that it is ok to depend on others and having a perfectly clean house is not the most important thing. Life means so much more to me now. I used to be a physically active person but now I stop to smell the roses and enjoy life each day. I have goals but I am learning to be realistic with these goals.
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